Thanks from all our family!
Tuesday, May 24, 2011
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: http://bit.ly/jFw0Q4.