Hope was born with Cystic Fibrosis. She is one of approximately 30,000 Americans living with this disease - for which there is still no cure. Her CF journey is still beginning. Most of the medications, therapies, treatments and surgeries that have been a part of so many other people's journeys have not yet become a part of her reality.
Hope's diagnosis was a long time coming. At 5 days old her pediatrician informed me she was carrying at least 1 CF causing mutation detected via newborn screen. It took 5 months and enrollment in a study conducted by Johns Hopkins to determine that she is also carrying a second, quite rare, CF causing mutation. In those 5 months we were continually reassured that it was looking less and less likely that she would be diagnosed. So, when she was, it was devastating for me. Being a CF Mom is still new to me. It is a role that I am still figuring out how to fill. I worry incessantly about doing something - anything - wrong and that any mistake I make (I am human, afterall) will have detrimental effects on Hope's health. I worry about how I will adjust to increased treatment demands and their implications, I worry about how and what to tell my children about this disease as they grow. I worry about the strain of worrying too much!! But I am fortunate beyond measure for these two beautiful girls and the boundless joy they bring to me. I am energized by the passion of others in my shoes, my CF co-parents, and the compassion of everyone that Hope's life touches. I am participating in this walk to show support for the larger CF community and to send a message to my beautiful daughter that come what may I am on her side. Until my last breath I will fight every day to give her the best possible life I can offer her.
Hope is growing up. By the time of the 2022 walk she will be 7 years old. While the intrusions her treatments make in her life are still fortunately minimal, she has learned how to do things it pains my heart to watch her do. She has learned how to explain her chronic illness to her same age peers, how to explain that her cough is a result of genetic mutations they can't catch and she can't help, she has learned to educate others and advocate for herself. To hear your 6 year old child ask a store check out employee to please pull their mask over their nose because she has CF and (at the time) was too yound to be vaccinated against COVID, to hear her say she's worried people will pick on her cough...it's hard. Trikafta is a promising medication, the stress I felt about quality of life when I was a new CF mom has alleviated some. I am better at just letting Hope be Hope, but I will still always participate in this fundraiser. There are still people in the CF population that cannot benefit from approved modulators because their mutations do not respond to them. And, most importantly, modulators are NOT cures. They come with side effects, differing results across the populations, and stop working when you stop taking them. They're progress - for sure - but they're not a CURE.
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 and Hopey!
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.