Welcome to my Page
Thank you for visiting my personal fundraising page that supports the “Fearfully and Wonderfully” team honoring Abigail McLain!
Shortly after Abigail turned one month old, she was diagnosed with Cystic Fibrosis. We quickly learned that we were both carriers of the defective CFTR gene and that Abigail had inherited the defective gene from each of us.
This life-threatening, genetic disease, causes the body to produce thick, sticky mucus and affects both the lungs and the digestive system. People living with CF are more susceptible to bacteria and infections getting stuck in their lungs. Over time, these infections cause a decrease in lung function that makes breathing incredibly difficult or impossible.
God has been so faithful throughout Abigail's life in granting us peace for our "fearfully and wonderfully" made little girl.
Abigail recently celebrated her 3rd birthday with a princess dress-up and tea party! For such a tough little cookie, she is GIRLY!! We are so thankful that in many ways, she is able to progress and develop like typical children her age, and celebrate special milestones like this with friends and family.
However, Cystic Fibrosis can be an invisible disease, and while she "looks" healthy most of the time, her body is fighting a constant battle against infection on the inside. Abigail has had a form of MRSA colonized in her lungs since before she was a year old. There is no effective eradication protocol through antibiotics for her, so her body is constantly at work fighting it.
Abigail current routine includes chest physical therapy (CPT) 2-3 times per day, breathing treatments 2-3 times per day, daily oral allergy medication, daily oral vitamins, daily nasal spray, and salt added to all of her food. Her morning treatment includes two different nebulized medications and takes about 30 minutes, while her evening routine is only one medication and takes about 15 minutes. If she starts to exhibit a cough or runny nose, we do an additional CPT and breathing treatment session in the middle of the day. These therapies are as common to Abigail as brushing her teeth! They have all just become part of our daily routine.
Remember those two defective CFTR genes that Abigail received, one each from mom and dad? Both of them are extremely rare. About 85% of people living with Cystic Fibrosis have at least one, often two copies of the Delta508 gene. For Abigail’s gene mutations, there are 400 other people in the CF registry with the first, and only about 80 with the second. She is the rarest of the rare. What does that all mean for her? It means that the drugs for treating Cystic Fibrosis that are currently on the market are not effective for her. Those drugs only treat people who have at least one copy of the Delta508 gene. Much research has gone into the development of drugs like Symdecko, Orkambi and the much anticipated “triple combo.” Abigail is not eligible for these drugs. The Foundation is committed to research for rare and nonsense mutations such as the ones that Abigail carries. She is essentially the “last piece of the pie” for whom MUCH RESEARCH IS STILL NEEDED.
For more info about the Cystic Fibrosis Foundation, check out our Team Page.
We would be humbled and grateful if you join us in making a monetary donation to support this mission for Abigail’s life UNTIL IT’S DONE!!