Our Great Strides Story:
Our son Christopher was born in 1995 and was diagnosed with Cystic Fibrosis at 5 days old after quite a rocky start to his life. At 24 hours old he was transferred to the NICU at TUfts NEMC and the search was on to determine what was causing him to have such serious breathing and digestive issues. After a number of tests...it was determined that CF was the culprit.
CF is a genetic disease which affects virtually every organ in the body, with thick, sticky mucous building up and causing blockages. While the lungs, sinuses and digestive systems are the most commonly affected, CF also affects the liver, kidneys, and reproductive system. The buildup of thick, sticky mucous provides a perfect breeding ground for bacteria and infection. Serious damage due to repeated lung infections is the leading cause of death in people with CF.
Chris works hard to keep his body as healthy as possible. He takes more than 30 different pills every day in addition to breathing treatments and a vibrating vest treatment twice per day to keep the mucous from building up in his lungs. While he does culture a number of bacteria in his lungs, and his lung function has declined as a result...he is working hard to live as normal a life as possible. Chris has had incredible care from his CF Teams at both Children’s Hospital and Brigham & Womens, as he transitions to adult CF care. Each visit includes time spent with a pulmonologist, nurse practitioner, nutritionist, physical therapist, pulmonary funtion technician and social worker. It truly takes a village to keep people with CF healthy!
Despite his illness, Chris has worked hard to be a successful adult. He is loving his work as an RN at South Shore Hospital and is so determined to give back to a health care community which has given so much to him!
There is currently no cure for CF. When Chris was born, we were told the median life expectancy was 18 years old. Chris is now 25 and due to the incredible push by the Cystic Fibrosis Foundation to actively seek research funding for multiple treatment options, we are getting closer and closer to a cure.
There are approx. 30,000 Americans living with CF who want the same thing Chris does: to grow up to live a full, adult life that includes graduating from high school, attending college, working in a field of their choice, marrying and having a family of their own. These things were not considered reasonable possibilities in the not so distant past-this is just not acceptable.
The CFF receives no federal funding for CF research and depends heavily on private donations. The CFF has an impeccable record of pouring virtually all donations into research and development of new drug therapies and treatments. You may have heard or read that there are very exciting new medications like Orkambi, Kalydeco, Symdeko and the newest FDA approved drug-Trikafta-all of which target the underlying defect of CF. We are truly getting closer to a cure but despite some great advances, we are still losing far too many people to CF at a young age. Chris has been taking Trikafta and is experiencing great results!
Please consider joining us to walk on Sunday May 17th at the Endicott Estates in Dedham or sponsoring our team, “Christopher’s Friends”. Every single dollar raised is important to us. We won’t rest until CF stands for “Cure Found”!
Until. It’s Done.
Debi and David Montana