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Have you ever heard of Marfan's syndrome

From the lens My daughter has Marfan's Syndrome.

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This is her 2009 Halloween

  • Atreyusmommy May 17, 2012 @ 10:58 pm | delete
    Amazing and very touching lens. My 3 yr old has Epilepsy. I wish the best to you and your beautiful daughter. I added you to my featured lens list under the section "Marfans syndrome". The lens is called do you want to be part of a support circle...? Thank you so much for sharing this
  • desa999 May 12, 2012 @ 9:17 pm | delete
    Thank you for sharing this and all the best for the future to you and your daughters.
  • SoundFinance May 8, 2012 @ 9:13 pm | delete
    Thanks for sharing. Your daughter is beautiful
  • KReneeC Apr 22, 2012 @ 6:05 pm | delete
    Such a wonderful lens. Thank you so much for sharing you and your daughters story. She is absolutely beautiful. I see that you said that you breastfed her until she was 20 months! That is incredible! I commend you!
  • Halloweenkitchenwitch Apr 22, 2012 @ 2:54 am | delete
    You and your daughter are very amazing people and I am thankful that you shared your wonderful story with me. This story helps to remind me how very remarkable people are.
  • techgain Apr 3, 2012 @ 8:48 am | delete
    your daughter is beautiful and adorable!! "AWESOME" hugs and love!!
  • ScottiesRock Mar 19, 2012 @ 10:05 pm | delete
    Your daughter is beautiful and extremely talented. You must be so proud of her. I have never hear of Marfan's syndrome. Thanks for the sharing your story. Blessed!
  • Richard3331 Mar 18, 2012 @ 6:27 am | delete
    A very brave girl - cead mile failte for both of you to my what I love about Ireland lens for St Patricks day
  • KimGiancaterino Mar 16, 2012 @ 1:21 am | delete
    I had not heard of Marfan's Syndrome until your lens. Thanks for sharing information of such a personal nature. Your daughter is beautiful and talented.
  • slotowngal Mar 4, 2012 @ 8:34 am | delete
    I'd never heard of Marfan's Syndrome. Thank you for sharing your daughter's story and for a wonderfully informative lens. Angel blessed!
  • laporter79 Feb 15, 2012 @ 2:27 am | delete
    I have a great friend with this disease, and my father in law died of complications from this (aortic annurism) My husband is over 7 foot tall, but tested negative for Marfan's. So, I dunno...a rough disease and God Bless her for being a trooper!
  • chromegrrrl Feb 9, 2012 @ 1:04 pm | delete
    I'm so glad you posted this lens. Thanks for all the great recommendations.
  • AliciaMae Jan 29, 2012 @ 12:46 am | delete
    Some historians believe that President Abraham Lincoln had Marfan's because of his stature and long limbs. Genetic conditions are actually much more common than people think, but we're only really learning about them now because of the capability to diagnose via genetic tests.
  • Merstarr Jan 28, 2012 @ 3:34 pm | delete
    I love that you put so much effort into nursing her. By doing so you likely improved her overall health :) Glad there are moms like you in the world, who will stop at nothing to give their deserving child the best they can have. Xo's for you both
  • TransplantedSoul Jan 27, 2012 @ 5:31 pm | delete
    Your daughter is lucky to have such an educated mother! This looks like a very difficult thing to deal with. My thoughts are with you.
  • KathyT Jan 27, 2012 @ 3:42 pm | delete
    Outstanding and educational lens - and undoubtedly a source of comfort and resources for others who are affected by Marfans Syndrome. I had not heard of this until I saw your lens today, and I thank you so much for taking the time to help us all understand this. My very best for your beautiful daughter and you, her beloved family! Blessings all the way around... :) Kath
  • scraps2treasures Jan 27, 2012 @ 1:24 pm | delete
    Excellent lens and congrats on making it to the front page. My daughter's appendix burst when she was 13 and when she was in the hospital for that, it was brought to our attention that she could have Marfan's syndrome. After taking her to several doctors, including a cardiologist, they never could definitively diagnose her. We were told she had about 50% of the characteristics. He told us to let her live her life like normal and she has fortunately never developed any problems.

    I am glad to hear your daughter is doing well.
  • ambrking Jan 27, 2012 @ 1:38 am | delete
    Excellent lens. I am not familiar with Marfan's syndrome and this lens made me aware of it. Thanks you for sharing this.
  • juliavm Jan 27, 2012 @ 1:10 am | delete
    I've never heard of Marfan's syndrome before today. Hope your talented daughter gets good medical treatment and lives the life she deserves to live. God bless.
  • Edutopia Jan 26, 2012 @ 2:44 am | delete
    Excellent lens, very informative. I hadn't really known much of Marfan's syndrome before reading and now I am glad I did. It is also great to hear that although your daughter must contend with this syndrome she has managed to excel in life. Truly an inspiration.
  • SecondHandJoe Jan 25, 2012 @ 4:53 pm | delete
    Sadly, this is another syndrome I knew nothing about, but I do now. I also think I know someone who may suffer with this now. This lens has opened my eyes more to both the challenges we face in life, and the triumphs of the human spirit in overcoming them-- and your daughter IS very talented!
  • Tipi Jan 25, 2012 @ 11:39 am | delete
    Returning with a blessing and congratulations for front page honors!
  • miaponzo Jan 25, 2012 @ 4:11 am | delete
    Thank you so mu ch for sharing this with us here. :) Blessed!
  • DogWatchColumbus Jan 24, 2012 @ 9:01 pm | delete
    What a wonderful tribute to your amazing daughter and a great lesson for the rest of us...
  • AlohaAstro Jan 24, 2012 @ 3:54 pm | delete
    My heart goes out to you and your daughter. I have a 28 year old daughter with Ehlers Danlos Syndrome, which is also a connective tissue disorder, and her symptoms are similar to your daughter's. My daughter is currently being seen by a cardiologist for carotid artery problems and an enlarged aorta. She has had a valve that goes gush-slush since childhood. Although my girl had problems with nursing and keeping food down when she was a baby, we didn't know what was really going on until she was 19 and needed a hysterectomy. She has also had surgery to correct a collapsing ankle. She was born with her eyes seriously deformed and has limited nearsighted vision in only one eye. Just like Marfan's, EDS has different severity in people. For my daughter, having a "normal" life isn't possible anymore. Sadly, some doctors think conditions like this are not life threatening, but they certainly can be. Our scariest times have been after surgeries, because her tissue and vascular system is weak and doesn't heal easily. I know her condition was most likely caused by my exposure to pesticides while pregnant with her. She has friends online she has made through various support forums and although there isn't a big awareness of these disorders, there seems to be far too many young people suffering from them. My daughter's biggest complaint is that school age children and senior citizens are supported in getting help when they have a disability, but there seems to be little available for young adults,which is sad.
  • Mistel Jan 24, 2012 @ 1:34 pm | delete
    So many unknown illnesses out there. Thanks for Creating more awareness of Marfans Syndrome!
  • katiecolette Jan 24, 2012 @ 7:47 am | delete
    Your daughter is so talented! She would make a great book illustrator - I know kids would LOVE her fairies :)
  • jasmineann Jan 24, 2012 @ 6:42 am | delete
    Thank you for sharing this, I learnt a lot from it. Your daughter is lovely and very talented.
  • Joie Jan 24, 2012 @ 4:45 am | delete
    Thank you and your daughter for being willing to share your story and educate people about Marfans Syndrome. I admire and appreciate you both.
    Congratulations, Jewels, on making the front page!
  • MJSchrader Jan 23, 2012 @ 10:38 pm | delete
    Beautiful lens, good luck to your daughter ...
  • Upon-Request Jan 18, 2012 @ 8:08 pm | delete
    Courageous of you both to share your story. I can see where she gets her talent from ;)
  • lisadh Jan 18, 2012 @ 7:12 pm | delete
    Thank you for sharing. I don't know anyone with this condition, but I bet this page has helped many people who are going through the same thing.
  • Gigglish Jan 18, 2012 @ 6:16 pm | delete
    Your daughter is beautiful! And talented as well. And you are both amazing for dealing so well with such a difficult issue.
  • Brite-Ideas Jan 18, 2012 @ 5:53 pm | delete
    So hard to go through this, our children are everything to us. Every breath we take we feel the beat of their hearts along with ours. All the best to you and your daughter.
  • Ladymermaid Nov 27, 2011 @ 4:11 pm | delete
    It is so sad the many things that can go wrong with the human body. I had not heard of marfans syndrome before and I send my wishes for her health along with this note. Happy Holidays.
  • gottaloveit Sep 25, 2011 @ 7:13 am | delete
    Your daughter is gorgeous and talented. Another beautiful lens.
  • GonnaFly Aug 17, 2011 @ 11:11 pm | delete
    I had never heard of Marfan's syndrome before. Thank you for sharing about your daughter. It certainly has not stifled her creativitiy!
  • TIRMassageStone Aug 15, 2011 @ 2:02 pm | delete
    Truly inspirational. I'm grateful to you for sharing.
  • blanckj Aug 11, 2011 @ 8:06 am | delete
    This was great and very informative. Thanks for sharing. Blessed!
  • ---Chazz Jul 16, 2011 @ 2:52 pm | delete
    Thank you for sharing your experience with Marfan's. Your daughter has talent and I am sure she, you, and the rest of your family realize how lucky you are to have each other! Kudos to you and yours for enlightening all of us.
  • elyria Jul 1, 2011 @ 6:22 pm | delete
    Today I learned something completely new from your Lens as I never heard of marfans syndrome before. Your daughter is so beautiful and so talented, I love her artwork, so inspirational! Thank you for sharing this story and big hugs to you and your daughter!
  • grandma_deal Jul 1, 2011 @ 6:39 am | delete
    You have an extremely beautiful and talented. I get the feeling here that you are very proud of her. And I'm betting her sisters are every bit as beautiful and talented. Very informative lens. I learned something new today.
  • TIRMassageStone Jun 28, 2011 @ 11:06 am | delete
    Never heard of this syndrome until now, wonderful story and the girl is beautiful.
  • ForestBear Jun 28, 2011 @ 7:59 am | delete
    No I had never heard of this disorder, thank you for sharing your story. Her artwork is wonderful. Best wishes to you and your daughter.
  • gypsyman27 Jun 27, 2011 @ 11:13 am | delete
    I am hearing of this disorder for the first time. I am a trained artist and your daughter's talent is obvious to me and anyone who sees her wonderful work. Thank you for sharing your story and I wish you and your children well. See you around the galaxy...
  • darciefrench Jun 26, 2011 @ 3:05 am | delete
    Lovely description of your journey with your child and Marfan's Syndrome. You're both bright lights and I appreciate your contributions. Many thanks.
  • debnet Jun 4, 2011 @ 2:57 am | delete
    Best wishes to your daughter. Blessed by a Squid Angel ;)
  • OutdoorLily Apr 8, 2011 @ 11:43 am | delete
    Wow! What a talent, her artwork is amazing! Thanks for sharing and best wishes :)
  • Floraluniverses Apr 7, 2011 @ 5:16 am | delete
    Your daughter is talented indeed! Her drawings are adorable! Wishing you all the bes, and no I've never heard of Marfan's syndrome.
  • PaulOnBooks Mar 30, 2011 @ 5:33 am | delete
    Angel Blessed: that's some for the lens, some for you and most for your daughter for prospering.
  • MaxReily Mar 28, 2011 @ 10:55 pm | delete
    As a nurse, I was fairly well informed about Marfan's, but I've never known anyone who was living with it. You and your daughter seem to be coping well, and and keeping a positive attitude. You've done an excellent job with this lens, and provided a lot of information on a condition that is not well-known.
  • PipPipHooray Mar 22, 2011 @ 5:28 pm | delete
    Thank you for growing the awareness.. this is the first I'd heard of it. Your daughters are all very beautiful.
  • jvsper63 Mar 21, 2011 @ 4:30 pm | delete
    This is the first I heard of it. You covered this syndrome well. This is a very touching lens, you have handled this very well, I know it has to be good for your daughter to have a mom so involved with Marfan's syndrome. You are lucky to have each other. Also your daughter is quit the artist. I wish you all the best in this fight.It sounds like you both are dealing with this in a positive way. That's Great Well done!!
  • lizziehumphreys Mar 20, 2011 @ 9:30 am | delete
    i have never heard of this before, but your daughter is lovely and her drawings are amazing!!
  • Blessedmombygrace Mar 17, 2011 @ 8:24 pm | delete
    I had not heard of this before. You gave great information and I love all the pictures. Angel Blessed.
  • Matie Feb 28, 2011 @ 9:00 pm | delete
    I've been really touched by this lens, I didn't know that such condition existed until now. It goes to show that people can always strive to survive for the best, no matter the difficulty, thank you very much for this lens
  • vallain Feb 21, 2011 @ 9:05 pm | delete
    You've covered this personal topic quite well and made it useful to others. Very well done!
  • kougar Feb 18, 2011 @ 1:59 pm | delete
    Informative and touching lens. Thank-you for sharing your daughter and her talent with us.
  • Margo_Arrowsmith Feb 17, 2011 @ 8:40 pm | delete
    Informative, touching and personal I am so honored to Angel Bless this lens
  • TheLittleCardShop Feb 17, 2011 @ 7:58 pm | delete
    Your daughter's art is beautiful she is very talented. Congratulations on your very well deserved blessings and Purple Star
  • Fitzcharming Feb 5, 2011 @ 4:06 pm | delete
    Your daughter's artwork is lovely. Visual arts is a talent I wish I had. This is a very informative lens.
  • CofCJenny Feb 3, 2011 @ 7:30 am | delete
    She is quite the talented artist!
  • Oosquid Feb 2, 2011 @ 3:26 pm | delete
    Your daughter is a lovely young lady.
  • darciefrench Feb 1, 2011 @ 11:02 pm | delete
    Congrats on your latest blessing on this fabulous lens
  • EuroSquid Feb 1, 2011 @ 9:41 pm | delete
    Great lens! It deserves yet another angel's blessing. Your daughter seems very sweet. I think you are a very proud mom! You deserve to be one, too! :)
  • rlivermore Jan 30, 2011 @ 9:29 pm | delete
    I had never heard of this before. Thank you for sharing about your beautiful daughter and her artistic talent.
  • LissaKlar Jan 29, 2011 @ 4:32 pm | delete
    I've never heard of this before. Your daughter is very talented and beautiful!
  • nightcats Jan 27, 2011 @ 7:13 pm | delete
    I have not previously heard of this syndrome. Your daughter is a beautiful girl.
  • LauraMarie Jan 27, 2011 @ 11:54 am | delete
    Your daughters are beautifull and love the artwork.
  • Sandy Jan 25, 2011 @ 10:54 pm | delete
    Love you Connie....
    Gma
  • Harshitha Jan 25, 2011 @ 8:41 am | delete
    I do not know if I should say great lens. Not that it is not. I loved it but also was touched by what I read. Your daughter is sure talented. May God Bless You Both
  • nightbear Jan 24, 2011 @ 6:13 pm | delete
    Hi Patricia. I just stopped by after seeing you on lens sightings. I love this lens and your daughter(s) are so beautiful, just like you.
  • kajohu Jan 24, 2011 @ 6:41 am | delete
    Thought I'd let you know that I found this page on Lens Sightings (I just saw WhiteOak's comment below). This is a truly remarkable lens -- I was touched by reading it.
  • WhiteOak50 Jan 23, 2011 @ 7:42 am | delete
    Good Morning! Just letting you know that I featured this page at: Lens Sightings Stop by and pick up your badge!! Congratulations!
  • randy1315@yahoo.com Jan 21, 2011 @ 10:53 pm | delete
    God bless I am glad you are doing so good, I too have Marfans and know how hard life can be. I just turned 50 and living a pretty good life, well might need surgery soon but I feel I have came a long way thanks for putting this site together
  • jptanabe Jan 17, 2011 @ 3:51 pm | delete
    Came back to bless this wonderful lens.
  • GabrielaFargasch Jan 17, 2011 @ 3:43 pm | delete
    I added your lens at my "lens hospital"! :)
  • BunnyFabulous Jan 4, 2011 @ 8:23 pm | delete
    Amazing lens. Thank you for sharing your daughter's story, and I'll be praying for her health and continued joy in pursuing her artwork and her dreams. My close friend's husband had undiagnosed Marfan's syndrome and died from a heart aneurism at age 30. Glad that you're getting the word out about treatments and earlier diagnosis.
  • blue22d Jan 1, 2011 @ 3:50 pm | delete
    Bless you and your daughter. She has wonderful talent. Thank you for this lens as before this visit, I had never heard of this syndrome.
  • ShamanicShift Dec 23, 2010 @ 8:25 pm | delete
    Awesome informative lens -- a very helpful, interesting, beautiful, thought-provoking, heart-warming read and reference.
  • Koupie Dec 22, 2010 @ 8:45 am | delete
    Your daughter really is a natural artists, I hope she continues. Thank you for sharing her story I have not heard of this disease before, and your page is very informative.
    Hope you all have a wonderful holiday season :)
  • moonlitta Dec 22, 2010 @ 4:36 am | delete
    Beautiful art works! Wishing you and her all the luck and goodness on earth!
  • beerhead Dec 21, 2010 @ 8:56 pm | delete
    Wishing you and your daughter all the best wish i could say more. My prayer's are with you, have a very happy holiday season.
  • trezpazz Dec 20, 2010 @ 4:49 am | delete
    never heard of it thought.
  • javrsmith Dec 18, 2010 @ 5:18 pm | delete
    I have never heard of it. Thank-you for sharing your story. This lens has been blessed.
  • KokoTravel Dec 18, 2010 @ 12:19 pm | delete
    Nice job... I know Marfan's as a nurse...
  • Momsbusy247 Nov 14, 2010 @ 10:20 pm | delete
    Your daughter and you are both amazing. She is a gifted artist, I love her work. I love this lens. Touching to say the least!
  • raphaelo Nov 14, 2010 @ 7:28 am | delete
    She is so lovely .. Blessings to her and you all the times :)
  • AmbrosiaPopsicle Nov 13, 2010 @ 7:06 pm | delete
    Blessings to you and your sweet daughter :)
  • NicoleJoy Oct 28, 2010 @ 8:42 pm | delete
    Thank you for this lens, I was not familiar with Marfan's Syndrome. I love your daughters artwork, it is beautiful!
  • CoolFoto Oct 8, 2010 @ 6:56 pm | delete
    I had never heard about this syndrome. Your daughter is a beautiful girl.
  • alteredkat Oct 8, 2010 @ 5:33 pm | delete
    Blessed and featured here: http://www.squidoo.com/100-blessings
    Thank you for opening up and sharing your /your daughter's story.
    Sharing knowledge and experience brings people together.
  • SofiaMann Sep 13, 2010 @ 11:12 am | delete
    When a child is born the mothers expect it to be perfect, a princess. But sometimes life brings surprises ... We learn to live with it and we become strong. New joy flow from watching them grow and overcome difficulties. Thanks for sharing your experience. I have a child with Klippel Trenaunay syndrome ... maybe one day I write about this.
  • eclecticeducation Sep 11, 2010 @ 12:51 am | delete
    What a beautiful and talented young lady you have! This lens is very educational. This is a condition that I had not heard about before. My little boy has some spinal issues. Luckily, they turned out not to be too serious (at least it seems so far), but I still remember the day the doctor told us that he thought he would have to have spinal surgery. I felt like the entire world fell on my shoulders at that minute. Luckily, after a MRI, it was determined that he did not need it. He did have to undergo surgery on his neck to loosen a muscle that was too tight and was pulling his head down. That was scary enough. It's hard seeing our children go through these things. I know I want to spare him all of this, it is just so hard. It is good to see that your daughter has turn out so well adjusted! I hope my little boy is the same. Blessed by an Angel.
  • Spook Sep 2, 2010 @ 7:24 am | delete
    Just dropping by again. Blessed by an Angel.
  • Ben Jul 22, 2010 @ 1:33 am | delete
    Gday i live in australia i love surfing ,fishing ,camping ,big machines ,music and i have a pectus excavation (specilist in aussie said biggest one he:s seen ) in which i had the chance to get it corrected (cometic only) when i was 17 but i thought... nah stuff it.Im 29 now and it still hasnt made much difference with the girl factor you just have to pick the right type (and they werent that bad looking either.)Also i have congenital gloucoma which left my left eye blind when i was a baby. Im about 6 foot and lean so with back problems i spose i could have marfan.Anyways I just wanted to say that dont stress too much about it.This goes to daughter AND mum i tell you if my mum could set up a web page on me when i was 17 she would have and in doing so embarresed me too no end LAUGHS.All the best.BEN from aussie.
  • karendd123 Jun 26, 2010 @ 7:12 pm | delete
    What a beautiful girl. All your girls are beautiful. I have never heard of this disease. I will pray for ya'll.
  • Jameliadesigns Jun 26, 2010 @ 12:59 pm | delete
    I have a family member with this disorder too.
    In my research into minerals for my book The Magic of Minerals in Crystal Healing (which is based on mineral nutrition) http://jeanettestein.webs.com/crystalmineralbook.htm I discovered that a zinc deficiency can create all the exact symptoms of Marfans syndrome. This also fitted with the diet eaten and also with him having a zinc deficiency. Certainly worth looking into.
  • WhiteOak50 Jun 13, 2010 @ 1:30 pm | delete
    This is a very well written lens! You did a great job putting it together Patricia!!
  • WordCustard Jun 10, 2010 @ 2:37 pm | delete
    Just paying a little return visit to this excellent lens to leave an~*~* Angel Blessing *~*~ here. :)
  • burgessvillian May 16, 2010 @ 3:45 am | delete
    This lens is an awesome way of letting others know about Marfan's. Very well done. I didn't know of this before.
  • Patricia Winston May 6, 2010 @ 4:17 pm | delete
    Archaeologists think the Egyptian Pharoh Akhenaten had Marfan's Syndrome.
    Your daughter is in very good company. Your lens is a beautiful tribute to this unique condition.
  • Serath May 5, 2010 @ 1:43 pm | delete
    Hi there,

    Thank you for sharing your daughters story. She seems like a very bright and talented young lady. I love her artwork and encourage your support of her.

    I my self have Marfan's...and your page has convinced me to share my unique insights thanks to the disorder.

    Yes, we can live with the condition...but it does make us different in certain respects...more so than usual. It's these differences that make us unique and give us unique insights into situations that people don't commonly come across.

    Keep sharing your experience. Not only can we help others with Marfan's but those around us without marfans that has the run of the mill condition that is 10% of the ones we have to deal with.

    All of the best to you and your daughter
  • Jewelsofawe May 5, 2010 @ 2:01 pm | delete
    Thank you for your words. It is good to talk to others with this. We have been alone in dealing it and just deal with it the best we can. Of course more so my daughter.
  • JoanneOtt Apr 27, 2010 @ 2:52 am | delete
    I have not heard of this before. Very touching story.
  • skiesgreen Apr 15, 2010 @ 11:07 pm | delete
    This was one lens I had to get back to and bless. Also featured on Sprinkled with Stardust. Great work

    Norma
  • Tipi Apr 13, 2010 @ 12:00 pm | delete
    My thoughts are with you and your daughter many times, just wanted to let you know that. I see I did fave this lens before, but my 5 Stars weren't showing-up, so I did that again. I have to say that this is a "Frank story..." but who is that Frank guy anyway? lol.
    God bless you!
    Susie
  • Airinka Apr 10, 2010 @ 1:47 am | delete
    Frank story...
  • Wordwinder Apr 4, 2010 @ 10:28 pm | delete
    Perhaps, there will never be an answer found for the question - Why is it that some are denied certain joys of life, while some others are granted more than what seems to be a reasonable share. Religious thought-streams abound to offer speculative explanations, none of which are truly provable. It will be easy for a person who hasn't undergone lifelong trauma, to say that life has its compensations, but it is only those who suffer that really know the meaning of those words. They are the ones who know the meaning of life better.
  • mich1908 Apr 2, 2010 @ 10:15 am | delete
    I felt very touched after reading your lense on your lovely daughter's condition. This is the first time I've heard of this syndrome. I hope both of you and the rest of your family will continue to be brave and positive. My son was diagnose with JIA when he was 5 yrs old. He's 7 yrs old now. As a mom, I can imagine how you feel. Well, now I just can't seem to get started on my 1st lense as I'm still absorbing all the information on how to do so! There' so much to read..Hope your daughter will live the kind of life that she wants and be happy always!
  • Swisstoons Mar 31, 2010 @ 4:38 pm | delete
    All good wishes to your beautiful and very talented daughter...and to you as well. Hoping for the speedy development of a cure for this disease. Take care. Tom
  • Brenda- AZ Mar 25, 2010 @ 12:22 am | delete
    Do you know if Cord Blood can help at all with any of the effects of Marfan's?
  • Jewelsofawe Mar 25, 2010 @ 12:33 am | delete
    Hi Brenda,
    I am not sure if it helps. They may know better at the Marfan's Syndrome website. I have the link on here so you can click on it and ask them there.
  • Brenda- AZ Mar 25, 2010 @ 12:08 am | delete
    I have to say that you have helped me to better see this disorder... Which is a scary thing for me. My Fiance has Marfan's Syndrom and I am 9 months pregnant with his first child. I am so scared that this may be her fate. You have helped me to see that she can be happy and vibrant just like anyone else no matter the outcome, but at the same time have shown me some scary things that may happen. I knew a little about Marfan's before I found out I was pregnant by in the last few months I have found out things that give me nightmares... I am so scared that I have sealed my daughters fate. I do appreciate you showing me a happier side to life with Marfan's! Thank you.
  • Jewelsofawe Mar 25, 2010 @ 12:35 am | delete
    People with Marfan's syndrome can live a long time. My daughter has a mostly normal life. She just does not do P.E. at school. She does go for walks and can do almost anything. She is very normal and very smart as well as very talented. I am sure your baby will be just fine.
  • Frankster Mar 19, 2010 @ 5:46 pm | delete
    I have never heard of Marfans Syndrome. Your lens is quite clear and easy to read. And your daughter is quite talented. I love her artwork. Bear hugs, Frankie
  • The_Idea_Gal Mar 18, 2010 @ 8:46 pm | delete
    Thank you for sharing your story and explaining Marfan's Syndrome. I wish your family and daughter the very best. She is an amazing artist. I love her style!
  • GreyNeko75 Feb 16, 2010 @ 5:56 pm | delete
    I read of Marfan's syndrome in an article, and as an aspiring doctor, I started looking it up. I came across your website and I'm so glad I did. You made me see it deeper than just a syndrome; there's a person involved and their story matters more than anything. I only hope I can take time to know each patient's story when I become a doctor. PS. her art is amazing-it shows such emotion.
  • Quirina Feb 13, 2010 @ 1:33 pm | delete
    Thank you for broadening my horizon! I don't remember having heard of this condition before, and your personal story makes a lasting impression. I too adore your daughter's artistic talent! I wish you and her that her life will continue to be as normal as you wish.
  • enslavedbyfaeries Feb 3, 2010 @ 11:22 am | delete
    Thank you both for sharing such a personal story. My nephew was diagnosed with Marfans Syndrome 2 years ago after his yearly trip to the eye doctor. His opthamologist noticed a problem during the exam. Your daughter is beautiful and her artwork is superb! I especially love the black and white sketches, they are amazing!! I wish you all the best.
  • crystaljewels Jan 31, 2010 @ 11:57 pm | delete
    I didn't know this syndrome and I thank you for sharing your daughter's life with us.
  • Sandrastevens Jan 30, 2010 @ 12:39 pm | delete
    Wonderful lens! May you and your daughter have an amazing lifetime ahead of you!
  • Sylvestermouse Jan 30, 2010 @ 9:36 am | delete
    I have returned to this lens to leave my angel blessings! Added to my Squid Angel Mouse Tracks lens
  • Levitah Jan 28, 2010 @ 9:57 pm | delete
    Interesting lens, Loved it. 5***** and favorited.
    Thank you for sharing this. Best wishes for your beautiful daughter. I loved her art work she is very good at it.
  • paperfacets Jan 27, 2010 @ 1:05 pm | delete
    No I have not heard of this. This information reminds me of a young man that was very tall and at twenty one his lung burst and started bleeding. It was removed. It is amazing the genetic discoveries being made to help manage debilitating conditions.
    Thank you for the excellent information and the story about your daughter.
  • asiliveandbreathe Jan 26, 2010 @ 5:51 pm | delete
    A very interesting and informative lens. I am particularly interested in the connection between this condition and Scoliosis. Enchanting artwork!
  • whitemoss Jan 23, 2010 @ 11:40 am | delete
    I had not heard of this. This lens is a great source of information and hope.
    Your daughter is very talented.
  • poddys Jan 15, 2010 @ 7:56 am | delete
    This is a wonderful lens, 5*****. Your family are so precious, and it's easy to see that you are a loving Mom. I love the artwork too, your daughter is very talented.
  • loganadrian Jan 13, 2010 @ 9:58 pm | delete
    I have never heard of this syndrome before. This is scary. So many things that can go wrong in our body. I wish everyone to be healthy.
  • EdmondHoggeJr Jan 13, 2010 @ 8:37 pm | delete
    Wow what a story and ive never heard of that before, and she is very brilliant and creative and blessed to have such a wonderful mother, may the Lord watch over all of you =)
  • LKing Jan 13, 2010 @ 4:04 pm | delete
    What a wonderful story - Thank you for sharing as this may help others! We have a friend who's grandaughter was told she may have this. I was amazed to find a Lens about it! Bless your family for sharing as it can be very personal to reach out to others. Great info!
  • arncyn Jan 13, 2010 @ 8:42 am | delete
    Your daughter is beautiful & very talented Patricia and I am praying that she gets the help she needs as soon as possible. She is very lucky to have a loving mom like you. I am blessing this lens so that even more people get to see it and hopefully it takes you somewhere closer to getting proper assistance for her. *Blessed by an angel*
  • Susan52 Jan 12, 2010 @ 7:24 pm | delete
    I have heard of Marfan's. My sons are tall and thin and someone actually approached us and gave us a pamphlet about Marfan's, just in case they had it and didn't know it. Fortunately, they are not affected. Prayers for your daughter and for your situation of being away from the doctors that she needs.
  • KNicholls Jan 9, 2010 @ 10:34 am | delete
    What a great tribute to your daughter and a wonderful lens. Angel blessed. Thank you for sharing the story. It is heartfelt and provides some really good information for people.
  • MarcMooney Jan 8, 2010 @ 11:38 am | delete
    Spent most of the time I allocate to Squidoo today simply looking for real stories about real people, thank you for sharing your story, many of these illnesses go unnoticed, personally I had never heard of this disorder, thank you for alerting us all to Marfan's Syndrome.
  • luvmyludwig Jan 8, 2010 @ 7:42 am | delete
    Congrats on 100! :) My all those badges are lining up ;)
  • Jan 6, 2010 @ 8:50 pm | delete
    What an awesome lens! great read! 5 *****'s and favorited! Happy New Year!
  • TanyaWhaley Jan 6, 2010 @ 7:04 pm | delete
    Truly Awesome lens! Love it! 5 *'s and favorited! Happy New Year! Wish you all the best!
  • Ladymermaid Jan 5, 2010 @ 9:29 am | delete
    I have never heard of this syndrome before...... there are just so many things that can go wrong with the human body....

    So long as we smile though - you just know that everything is A-Okay.
    Thank you for stopping by my lens on Raynauds syndrome
  • ArtByLinda Jan 4, 2010 @ 1:46 am | delete
    Thanks for sharing your daughters story with us, what an amazing family and support you have together. May you all be blessed with years of happiness, strength, sharing, and new adventures. Isn't Shriners hospital amazing?
  • bloomingrose Jan 3, 2010 @ 12:36 pm | delete
    Thanks for the information about this illness and for sharing about your daughter's life. As a beside, there is serious speculation that Abraham Lincoln had this illness. I think your daughter is lucky to have a supportive family and the medical attention for her needs. I am praying for strength and wisdom for all who are involved with this lovely young lady.
  • Cherrybomb2009 Jan 1, 2010 @ 3:36 pm | delete
    I've never heard of this syndrome until I read this lens. Really informative. About finding an orthopedist-- where will your daughter be attending college? If she's going out-of-state (I don't know if she can with her condition, but if so), perhaps she can find an orthopedic doctor near there. The problem would be finding other doctors to meet her other needs.

    On an unrelated note- how did you do the "blessings" modules? I want and need to do this for one of my lenses...
  • Ladydove62 Dec 30, 2009 @ 4:45 pm | delete
    Quite honestly I had not heard of Marfan's syndrome before. Thank-you for sharing this informative and inspiring story with us. Your daughter is beautiful and her artwork is delightful. Sending prayers from my little family to yours.
  • KateW39 Dec 28, 2009 @ 6:36 pm | delete
    Thank you for sharing your inspiring story. Best of luck to you and your daughter.
  • bdkz Dec 27, 2009 @ 2:17 pm | delete
    Thanks for sharing your story. 5 Stars and a Squid Angel Blessing!
  • Treasures-By-Brenda Dec 26, 2009 @ 8:14 pm | delete
    Well done lens sharing your very personal story. Blessed.
  • Bemused-in-Tasmania Dec 23, 2009 @ 2:51 pm | delete
    I have a son with Marfan's so this resonates with me . . . Beautifully done. Thanks
  • Jewelsofawe Dec 21, 2009 @ 4:04 pm | delete
    Thank you! This lens does get google and yahoo traffic and i have some wonderful people come by and leave comments and any help they might know of and I am grateful for that.
  • dustytoes Dec 21, 2009 @ 3:57 pm | delete
    I knew nothing about this disease...your daughter is a talented beauty and also brave I'll bet. This lens is a wonderful tribute to her and would be encouraging to anyone looking for information on Marfan's Syndrome. Thank you very much for visiting and blessing 2 of my lenses...I do appreciate it!
  • seashell2 Dec 14, 2009 @ 10:00 am | delete
    Beautiful lens... I had never heard of this disease before now! Blessings to your daughter and family!
  • Pastiche Dec 14, 2009 @ 9:01 am | delete
    Despite her problems, your daughter has a brilliant smile - no doubt this is due to the wonderful support and love she receives to live as full a life as possible with her condition. Talented artist, just like her Mom!
  • grannysage Dec 13, 2009 @ 1:48 am | delete
    A hug for your daughter from me. My daughter had back surgery too for severe scoliosis. She is 22 now and still has a lot of pain because something seems to have happened to her nerves. She has to take medicine for neuropathy, but like your daughter is doing her best to live a full life.

    We mothers wish our children never had to suffer. A sad but beautiful lens.sn
  • shankapotomus Dec 11, 2009 @ 4:55 pm | delete
    Just awesome. I hope you make a ton from this lens. You Should. My 5 *'s are yours.
  • Ang Dec 10, 2009 @ 8:24 pm | delete
    I am being told my daughter has Marfan's. My husband and I a trying to accept this. She was 24 weeks premature and is now 8. Although she is doing well she has practically every symptom of Marfan's. We always thought it was all the premature birth. Your daughter is beautiful and your website has been a great inspiration. God bless your family!!
  • Jewelsofawe Dec 10, 2009 @ 9:46 pm | delete
    I hope you are doing ok with the info. I know when I was first told I was scared. My daughter does ok and has had a big surgery that has helped. I just have to make sure she gets doctors to make sure she is ok. God bless your family as well!
  • makingamark Dec 10, 2009 @ 7:24 pm | delete
    Another website for you - this is the Marfan Trust http://www.marfantrust.org/index.html - and this is the page with their newsletters http://www.marfantrust.org/about/newsletters.html

    Plus this is the Dr. Anne Child is the doctor I saw (when she was working at St George's Hospital) see http://www.marfantrust.org/research/medical-director-profile.html. If you're not having any luck finding out where the centres are in the USA which specialise in this you could try contacting her. I'm sure she'd know where they are as she's been doing research on Marfans for years and years.
  • Jewelsofawe Dec 10, 2009 @ 9:47 pm | delete
    Thank you for all your resources. I appreciate that.
  • makingamark Dec 10, 2009 @ 7:16 pm | delete
    I'm sorry to hear you're not getting a lot of local support. Have you tried contacting the teaching hospitals which provide support for Marfans to see if they do provide any outreach support?

    My personal experience is that I've not only heard of Marfan's Syndrome - I've been tested for it by the consultant specialising in it at a London Teaching Hospital! I've also attended a Marfan Association UK Conference for people with Marfans Syndrome and met a lot of people with the syndrome. My diagnosis was another connective tissue disorder and it's probably important to remember that a number of the symptoms are common to a number of related but different tissue disorders.

    From observation of LOTS of people with Marfans at the conference, it seemed to me that the symptoms re small jaw and arched palette seemed to be frequently associated with those people who had the very pronounced long fingers and toes.

    Stretch marks also seem to be a very common feature but I don't know if that's common among the connective tissue disorders. (I've got them and my disorder turned out to be Joint Hypermobility Syndrome). Stretch marks are certainly recognised by the NHS as a symptom.

    The Marfan Association UK is http://www.marfan-association.org.uk/ - it has a lot of reading material which has been unearthed from research over the years.
    This is the National Health Service website page for Marfan Syndrome http://www.nhs.uk/Conditions/Marfan-syndrome/Pages/Introduction.aspx. - which identifies symptoms, diagnosis and treatments.

    Hope this helps! Keep the feet sorted - that helps so much with everything else!
  • newbizmau Dec 9, 2009 @ 11:13 am | delete
    By the pictures I could never tell anything was wrong. She's so beautiful. You are blessed!
  • karmasherbs Dec 7, 2009 @ 11:21 am | delete
    Thanks for the education on Marfans Syndrome... I have not heard of this.
    I have severe scoliosis, but have faired lucky with regards to surgery. I have the S shape and the degrees are almost the same with each curve. This enables me to keep myself with somewhat better posture.
    Have you heard of homeopathic tissue salts? http://www.schuesslersalts.com/573.html
    Keep strong!! - Many Blessings...
  • Wysiwigs Dec 7, 2009 @ 9:04 am | delete
    No, I have never heard of Marfans before this. Your daughter is quite the talented artist, and I'm so very glad to know that she is doing well :o) Nicely done!
  • luvmyludwig Dec 7, 2009 @ 7:35 am | delete
    Your daughter is beautiful and I will be sure to keep you both in my thoughts and prayers. I hope that you can get her the help she needs. Thank you for sharing your story.
  • Greekgeek Dec 5, 2009 @ 2:08 am | delete
    Best of luck to you and your daughter -- I hope Maya's note below will help you get connected up with the medical care you need!

    My next door neighbor just gave birth to a lovely boy with Mobius Syndrome. It's different, but it's another one of those serious syndromes that is a challenge for child and parents throughout their lives.

    Having gone through Juvenile Rhematoid Arthritis -- nothing compared to either of those -- I have so much admiration for both kids and parents working through these kinds of challenges.
  • Maya Dec 2, 2009 @ 12:30 pm | delete
    Hi! I came across your blog via "Google Alerts" for Marfan. Thanks for doing such a great job getting out awareness. I have Marfan too, and I'm one of the leaders for the National Marfan Foundation's teen program. We have a couple of websites to help teens connect that your daughter might be interested in: www.marfan.org/teenspace and http://nmfconnect.marfan.org.

    I also saw your post about not getting the help you need in Oregon. The 2011 NMF Conf. is going to be held in Portland, and it's my understanding the NMF is working to train doctors out there. Amy Kaplan, the NMF nurse, can help you try to connect to the doctors your daughter needs, or help your local docs get more information. Amy's email address is akaplan@marfan.org, or you could call her at 1-800-8-MARFAN. There's also a support group that covers WA and part of OR that my friend Larie Beck runs, and her contact information is on the NMF's website in the volunteer section: www.marfan.org. My email is marfmom@gmail.com and I also have a blog about being a mom with Marfan: http://marfmom.wordpress.com.
  • sema Dec 1, 2009 @ 7:11 am | delete
    Patricia,I have not heard about this disease before.I admire both of you for handling the problem with courage.Wishing the best always to your family,
    sema
  • vitalindulge Nov 30, 2009 @ 10:12 pm | delete
    My big brother and my neice both have this condition. I love your lens, its very informative, yet very very personal.

    Kudos to you!
  • LoKackl Nov 30, 2009 @ 1:08 pm | delete
    I admire the mother of this adorable girl for telling so beautifully a horrid fate; that such meanness could accost a theme so fair requires great courage. Thank you.
  • ImproveMeU Nov 30, 2009 @ 12:17 pm | delete
    Gr8t work on your lens it brings awareness to Marfans Syndrome and beautifully honors your daughter
  • ChapelHillFiddler Nov 30, 2009 @ 8:44 am | delete
    This lens is going to help a lot of people. My son had to have titanium rods screwed into his back because he got kyphosis as a side effect of radiation treatment for his brain cancer; I saw how hard that is. I've featured this on my fan-club thank-you lens so - thank you!
  • bengriston Nov 29, 2009 @ 5:30 pm | delete
    I have never heard of Marfans Syndrome thank you for brining it up. Hopefully there are only good things ahead for your daugter.
  • inkserotica Nov 27, 2009 @ 4:00 am | delete
    So worthy of a blessing by a passing Angel :) and, of course, 5*!
  • Tiffany Nov 26, 2009 @ 9:29 am | delete
    Never heard of this before, very informative. I hope she gets the help she needs.
  • mezachan Nov 26, 2009 @ 3:56 am | delete
    Hey mom! Great lens, on Connie, it's really informative. It's good to get Marfan's Syndrome out, because a lot of people haven't even heard of it!
  • spirituality Nov 25, 2009 @ 12:17 pm | delete
    Great lens. Sorry to hear you're not able to get her to the right help. blessed by another squidangel :)
  • Norma_Budden Nov 25, 2009 @ 12:04 am | delete
    I've never heard of this syndrome, Patricia. By looking at your daughter's photos, I would never have guessed she suffered from such an ordeal - so, for that, it's great to be thankful.

    Perhaps you should consider creating a lens requesting donations to help your daughter get the help she needs - as one Squidooer did with her 500 hats lens...or pray that God will intervene on your daughter's behalf. After all, He knows her every need.
  • sukkran Nov 24, 2009 @ 7:40 pm | delete
    i did not know any thing about marfan's syndrome. thanks for sharing this information. i pray god for her.
  • JenOfChicago Nov 24, 2009 @ 11:09 am | delete
    Thank you for sharing your story - I didn't know much about Marfan's Syndrome, but I am also a former "alum" of Shriners Hospital!
  • imolaK Nov 23, 2009 @ 5:14 pm | delete
    Being a geneticist I understand your problem.Thanks for sharing this story.
  • skiesgreen Nov 23, 2009 @ 1:24 am | delete
    No, this is new to me. What a hideous condition and now I know what it is there are instances of people in my past, mainly seen while traveling, that must have had it. Thak you for sharing and while I can't bless your lens I can ask the Spirit to bless your daughter and to grant her healing. 5*, fave and lens rolled

    Norma
  • Nov 22, 2009 @ 9:38 pm | delete
    Thank you so much for sharing, God bless her. 5 stars!
  • mbgphoto Nov 22, 2009 @ 9:16 pm | delete
    I had never heard of Marfans. Thank you for sharing.. I'm sending a blessing your way!
  • OLDRUSTYBUCKET Nov 20, 2009 @ 11:44 pm | delete
    One of my classmates had a son with marfans. He was a happy kid in spite of all corrective surgery, mostly on his face. He loved the Lord. Arson in his apartment complex took him at the age of 30. During the altar call ending his funeral there were 18 or 20 hands that were counted.
  • MiaBellezza Nov 20, 2009 @ 8:51 am | delete
    Thank you for sharing your daughter's story and thank you for your blessing.
  • aj2008 Nov 19, 2009 @ 7:19 am | delete
    Sending Angel Blessings to you and your lovely daughter. Thank you for sharing - I am sure that this lens is an invaluable resource for anyone trying to find out what it is like to live with or live with someone who has Marfans Syndrome.
  • EverythingMouse Nov 18, 2009 @ 10:12 pm | delete
    Thank you for sharing your daughter's story with us. Another well deserved Angel Blessing for you
  • mukunda22 Nov 18, 2009 @ 3:36 pm | delete
    Thank you for sharing your daughter's story--and YOUR story--with us!!

    ####blessed####
  • Ener-G Nov 17, 2009 @ 9:42 pm | delete
    Her spirit heart is absolutely amazing. Thank you for sharing this beautiful caring story with us.
  • stacy_mcdaniel Nov 17, 2009 @ 9:25 pm | delete
    I have never heard of this before. Thanks for making me aware of this condition. Best wishes to you and your family.
  • lasertek Nov 17, 2009 @ 7:48 pm | delete
    I've never really heard about this condition before. Good thing you've come up with this lens and shared all the information and experiences that you've come across with. Thanks so much.

    I commend you for your compassion and strength. Hope that your child's story will inspire other families who are undergoing the same situation.
  • WhiteOak50 Nov 17, 2009 @ 6:32 pm | delete
    You did a great job putting this lens together. I have never heard of it before, thank you for sharing it. Please know I wish the best for you and your daughter.
  • sandyspider Nov 15, 2009 @ 8:21 am | delete
    I wish the best for your daughter and you. Congratulations on your purple star.
  • theraggededge Nov 15, 2009 @ 7:57 am | delete
    I hadn't heard of this. This is a great lens and will bring it to the attention of more people. Your daughter is absolutely beautiful and very talented. *****
  • Sylviane_Nuccio Nov 14, 2009 @ 9:38 pm | delete
    I have heard of this disease once before. It is a serious condition. All the best to you and your daughter.
  • boshemia Nov 14, 2009 @ 1:50 pm | delete
    I have only heard of this condition once, the creator of my favorite Broadway musical RENT, Jonathan Larson had it, but his was undiagnosed until it was too late. Diagnosis and treatment could save many lives if more people were made aware... thank you for doing your part. May your daughter have a life filled with love and laughter, because of all of the things this world has to offer those are the things worth living for.

    Blessings dear and congrats on a well deserved purple star!
  • Gandree Nov 14, 2009 @ 10:18 am | delete
    My grandson has a defective chromosome disease so I know how difficult it can be to live something like that. It's so encouraging to see how gracefully she has dealt with it. Her art is wonderful. Thank you for this lens. :0)
  • CoolFoto Nov 13, 2009 @ 8:44 pm | delete
    Your daughter is a beautiful girl! I had never heard of this condition although I have known girls with scoliosis. Congrats on your purple star. May God bless your family and provide the medical help you need.
  • WindyWinters Nov 11, 2009 @ 7:59 pm | delete
    Congratulations on your Purple Star! Well Deserved and All the Best for Both of You. :)
  • daoine Nov 10, 2009 @ 3:17 pm | delete
    I wish you and your daughter and family much strength as you all cope with this.

    I heard and started reading up about this because doctors recently thought my mother might have a form of Marfan's (she doesn't, though, after further investigation). It sounds like a very frightening syndrome, from what I read.
  • TylaMac Nov 10, 2009 @ 7:07 am | delete
    I think its so important that you have made this lens to educate people about Marfan's syndrome. I hope the attention you're bringing to it will help bring better diagnosis and treatment. It's really heartbreaking that so few doctors are specializing in treating Marfan's Syndrome.

    I have read several articles that speculated that Abraham Lincoln may have had Marfan's because he seemed to show some of the symptoms but I've never seen it explained as well as you have here.

    Your daughter is a beautiful young woman and a very talented artist and I pray that she continues to do well and remains as healthy as possible. I will share this lens with everyone I can so that more people can be come aware of Marfan's.
  • TrinaSonnenberg Nov 10, 2009 @ 6:53 am | delete
    What a beautiful young woman. I'd never heard of this before. Thanx for sharing your story. You are courageous and your daughter is courageous too. Wow!
  • debnet Nov 10, 2009 @ 2:19 am | delete
    Thank you for sharing your story and enlightening us to this syndrome. I send good wishes for the future to you and you daughter.
  • WindyWinters Nov 10, 2009 @ 1:14 am | delete
    What a wonderful and talented daughter. I hope she will be able to get more help in the near future. I agreed with Spook that there must be a Rotary or Lions Club in your area to help with expenses. Best Wishes to Both of You and thanks for sharing your story. :)
  • Heather426 Nov 9, 2009 @ 6:35 pm | delete
    Very brave of you to share your story like this! Squid Angel blessed.
  • nightbear Nov 9, 2009 @ 3:56 pm | delete
    What a beautiful and sensitive lens. I am sorry for your daughter but I am so glad she has you. You will find a way. You are strong and it would seem so is your daughter. May God bless you both.
  • j_barnhart4 Nov 9, 2009 @ 2:52 pm | delete
    This is a touching and beautiful lens...your daughter is quite the artist. Good luck to you and your family. Blessed :)
  • Spook Nov 9, 2009 @ 11:54 am | delete
    Honestly I had never heard of it. Is there not a Rotary or Lions club in your area or something similar? I have no doubt that if they knew of your daughters case they would be willing to help. I'm very impressed with all of you and your courage and I think your daughter has more than a talent. She has a gift. Blessed by an Angel.
  • hlkljgk Nov 9, 2009 @ 11:30 am | delete
    thank for sharing your story. you sound like a strong family.
  • HERBMASTER Nov 9, 2009 @ 11:21 am | delete
    I hope that you will find this helpful in regards to your daughter's disease and nutrition http://www.ctds.info/marfan.html
    I have found there are lots of diseases that have multiple names and when you look deeper, one may have answers which helps the others. There is a link between this and nutritional deficiencies which you probably know but just in case, here it is.
  • Cousin Tami Nov 9, 2009 @ 10:39 am | delete
    I had no idea you guys had been through such an ordeal. I am thankful that she was diagnosed before the disease got too far out of hand. You've both been very brave in the face of adversity. I hope that maybe one day Connie is able to relocate to a place where there is a doctor who can continue to treat her.

    Thank you for telling her story.
  • Cousin Tami Nov 9, 2009 @ 10:39 am | delete
    I had no idea you guys had been through such an ordeal. I am thankful that she was diagnosed before the disease got too far out of hand. You've both been very brave in the face of adversity. I hope that maybe one day Connie is able to relocate to a place where there is a doctor who can continue to treat her.

    Thank you for telling her story.
  • WordCustard Nov 9, 2009 @ 7:47 am | delete
    Thank you for making this lens. Your daughter is lovely and her artwork is beautiful. Wishing her a very happy and healthy future.
  • BevsPaper Nov 9, 2009 @ 7:46 am | delete
    I was not aware of Marfan's Syndrome. Thank you for educating us on it. Blessed by an Angel today!
  • mulberry Nov 9, 2009 @ 7:22 am | delete
    I remember learning a little bit about Marfan's Syndrome in school; you have great info here though! It looks like your daughter is doing well, and your attentiveness/support has made the difference.
  • Laniann Nov 9, 2009 @ 5:39 am | delete
    I have never hear of Marfan's Syndrome. I am glad your daughter is okay. She is very talented and does wonderful art.
  • grandma Nov 8, 2009 @ 9:37 pm | delete
    Tricia,
    What a beautiful tribute to Connie, and a lot of information that will let others know they are not alone.
    Love you,
    Mom
  • GrowWear Nov 8, 2009 @ 9:02 pm | delete
    Had never heard of it. ...Your daughter is beautiful and talented. Her story here will help others. Thank you. Angel Blessed.
  • AuntC Nov 8, 2009 @ 8:21 pm | delete
    Thanks Tricia

    I learned a lot about Mafan's and it's about time- I love you all
  • HorseAndPony Nov 8, 2009 @ 7:07 pm | delete
    I have never heard of Marfan's Syndrome. You both have been very brave. I wish you the best with the continuing checkups and her next surgery. She is extremely talented. I love her drawings.
  • rms Nov 8, 2009 @ 6:51 pm | delete
    I never heard of Marfan's. Thanks for sharing your beautiful talented daughter's story with us! So glad she's okay!
  • Ramkitten Nov 8, 2009 @ 6:38 pm | delete
    I'd not heard of this either. Thank you for educating me about this. I'm glad your daughter is doing well, and, yes, she certainly IS talented!
  • LeanneChesser Nov 8, 2009 @ 5:58 pm | delete
    I've heard of Marfan's Syndrome, but never experienced it first-hand. It was good to read your personal story to learn more.
  • Sylvestermouse Nov 8, 2009 @ 5:34 pm | delete
    I have never heard of Marfan's syndrome and it sounds terrifying to both the child and the parent. So glad you got the medical help and diagnosis so you could get the proper care. She looks like a really sweet girl!
  • OhMe Nov 8, 2009 @ 5:26 pm | delete
    I have heard of Marfan's Syndrome but learned so much more about it from this excellent lens. Your daughter is very talented. I loved seeing her drawing. Blessed by a SquidAngel
  • KaraLynnRussell Nov 8, 2009 @ 5:22 pm | delete
    I had not heard of Marfan's syndrome. Thank you for the information and especially for showing your daughter's art work. It's good to see the positives, too.

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