Lucy’s story
The 2013 Nordkapp Challenge for The Marfan Trust has been inspired because of one person – Lucy Morris.
Throughout Lucy’s entire life she has been in and out of hospital, receiving treatment for a never-ending range of health issues. However, less that 12months ago, Lucy finally understood the cause of these issues when she was diagnosed with Marfan Sydrome.
Click on the link below to listen to a 20minute interview with Lucy and her mum, Alison, where they share their story…
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January 18, 2013 at 7:03 pm, John Stride said:
Thank you so much for bringing this little known issue to our attention. I will be avidly following Steve and the team’s trip to the Nordkapp and would like to wish Lucy all the very best for the future. You sound such a brave girl and are blessed with such caring and concerned parents.
April 27, 2013 at 5:28 pm, Julie said:
Hi Guys
Your story echos my own struggle to get my daughter helped. Almost 20 yrs on and in spite of a strong family history of Marfans they are still dragging their feet, mainly due to the lack of heart problems which we know in the ladies of the family often dont appear till late in life.
Kayleigh is long limbed, has a high pallet, blue whites of the eyes, a spinal curve and subluxation on many major joints. Kay spends most days in pain. She has 4 children and to date the family history is being over looked but 2 do seem to have signs of Marfans.
I wish you much luck in your future and thank you for hat you are doing to raise awareness.
April 29, 2013 at 1:20 pm, Helen Smith said:
I was found to have Marfans after my aorta split which meant my daughter was then found to have the same condition. I find it frustrating that the condition affects so many things but it is difficult to find anyone who knows anything about it. Most information about the condition is conflicting. It is marvellous that at last someone is managing to raise the profile of this condition. Well done and good luck from Worcester.
May 01, 2013 at 6:11 am, beatrice Ring said:
You’d be surprised – maybe – how many people with marfan have no one to go to for comfort, or medical help, especially if they don’t “look” like they have a problem from the outside. I am a photographer and video director but for 20 years I worked as an actress and model, and no one believe me when I talk about it, so I applaud you work, and send you a big hug (with my long arms I can hug real nicely ;D)! Maybe our roads will cross, hope to see you in California for an awareness road trip here as well, we need one bad!
With lots of love,
Beatrice Ring
San Diego, CA.