Money buys science, and science saves lives.
Lilian was diagnosed with Cystic Fibrosis, a hereditary disease affecting primarily the pancreas, lungs, and digestive system at just 2 weeks old. Terrified and heartbroken, Brian and I decided almost immediately that the current life expectancy of 40 years (40!?) is unacceptable. This is not OK.
Now seven years old, Lilian is a spunky, adventurous, and fiery little girl! She looks perfectly healthy, but inside her little body there's a battle being fought every day. Lilian's pancreas is unable to produce digestive enzymes to break down and absorb food; when she was 6 weeks old we learned to spoon feed her special synthetic enzymes to replace what her pancreas cannot provide. Each day Lilian takes between 20 and 30 enzyme capsules. This is considered an amazingly small amount for her age and size. In June 2015 Lilian added the new drug Kalydeco to her daily regimen. Kalydeco targets CF at a cellular level, slowing the progression of the disease in her body. We are THRILLED with the results so far! Lilian's lungs are clear as of her last check up, but as she ages (and exacerbated by common colds, infections, naturally occurring bacteria, etc.) her lung function will deteriorate. To what extent, we simply can't predict. Hospitalizations, IV antibiotic therapy, percussion vests, lung transplants, diabetes, sinus issues...these are things no parent wants to plan for.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them. We walk for Lilian.
All we need you to do to become a member of our team is click on the "Join our Team" button. From there you can make a donation and start your fundraising. This is our way of coping with and fighting this disease - we hope you'll join our fight!
Team Lilibug all the way.
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