I am so excited about The Marfan Foundation’s initiative to focus on the quality of life issues that affect our community. As the mom of a nine-year-old girl with Marfan, I think about my daughter’s quality of life — at present and in the future — on a daily basis. Quality of life encompasses so many things, and the area that has been a primary focus for us in the last year and where we have seen fantastic results is in nutrition and weight gain.
On May 17, 2015, Alix McLean Jennings, of Madison, NJ, led Team Cassie in the Superhero Half-Marathon and Relay in Morristown, NJ, in honor of her daughter, Cassie, 8, who has Marfan syndrome. With her permission, we are sharing the letter of gratitude that she sent her many family members and friends who supported her in her effort to raise money for The Marfan Foundation.
When my younger daughter Cassie turned one almost six years ago, I thought we'd ended the craziest year of her life. But this past year is definitely in the running. And I’m sharing our story during this year’s Research and Progress Drive because, more than ever, I see how important the work that we all support through The Marfan Foundation is in my family's life.
Cassie was diagnosed with Marfan syndrome at birth, thanks in part to The Marfan Foundation’s early diagnosis initiative, and the following months involved weekly visits with each of her 11 specialists. The care Cassie received was incredible -- very thorough and attentive -- and she thrived. I contacted The Marfan Foundation when she was just six weeks old – and they have been a source of information and support ever since.