Madeline & Brianna are about 15 months apart and have always loved being together. Now that we live four hours away, visits are few and far between. When an illness as simple as a cold or a lingering cough prevents them from getting together, they are heartbroken.
Thanks to donors like you, research has brought a medication for Brianna's mutation available for children her age. It may not seem like the research makes a difference, but new medications continue to allow children with CF to experience some of those "little things" in life that so many of us take for granted. This is what Erica (Brianna's mom) posted earlier this year:
Pseudomonas is a common but VERY dangerous bacteria for children with CF. Pseudomonas lives and breeds in water... and therefore unless something can be completely dried it is UNSAFE. Reusable straws have ALWAYS been off limits to her because pseudomonas and mold can grow in it.
That may not seem like a big deal- but to a 7 year old who sees ALL her friends drinking out of straw cups and water bottles it is HUGE. It makes her different. And at 7 different isn't always a good thing.
Given that Trikafta is around the corner, we came to a compromise. Brianna is now able to use these straw tops WITHOUT the inner straw. Those are still not ok. But with our UV sterilization machine we felt that these tops would be able to be clean enough for her.
She is elated. She said "MY friends won't know there's no straw inside and I can feel like everyone else". Who knew this was such a big deal to her??
It is the little things in life that make the biggest difference. Thanks to your donations these little things add up to improve her quality of life.
Participating in this walk is one way for us to support Brianna and her family as they strive to make CF stand for Cure Found! Please consider a donation, EVERY SINGLE DOLLAR COUNTS!
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. I walk for them and hope you will support me in my efforts.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Please support me!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.