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Tuesday, May 24, 2011

Marfan Syndrome

My beautiful 17-year-old niece Emma was born with a rare genetic disorder called Marfan Syndrome.  This makes her tall and slender, but also prone to heart disease and eye problems.  She is a brave and confident young woman, artistic, gifted, brilliant, articulate, who takes the rudeness of strangers in stride when they feel obligated to comment on her striking 6 foot 5 inch height, which as you might imagine is a challenge socially and emotionally as a junior in high school.  God has given her compassion and cheerfulness to live with the physical limitations of her disorder.  She is on a heart medicine now, and will be for life.  This week the National Marfan Foundation is competing in a contest for grant funding, which goes into research to prolong the lives of people affected by Marfans.  People can vote for their favorite charity, and Chase Community Giving will distribute funds based on the number of votes.  The deadline is tomorrow, so please click on the following link today:

Thanks from all our family!

1 comment:

Jane said...

I have read your blog for a few years now and this last Christmas I saw your pictures and saw Emma. She and her family go to our church here in NC. I wasn't sure how you were related.

Last summer Emma did VBS and my children came home saying how nice the "tall" girl was. I told them she has a name and they were to find it out and call her by her name. They did- my children think Emma is sweet and they loved getting to know her.