We are SO very excited that you are supporting us for the 2019 Great Strides Walk! This year's walk is on Saturday, May 16th!
Team Kure for Kennedy was created shortly after we learned of Kennedy's diagnosis with Cystic Fibrosis at 3 weeks old. When we learned of Kenendy's CF diagnosis, I immediately reached out to the Cystic Fibrosis Foundation for help and support, and have been involved ever since. Over the last 6 years, with the love and support of our family and friends, Team Kure for Kennedy has raised over $140,000 for the CF Foundation and know that one day our efforts will be part of an ultimate cure!
You may be asking yourself, what is Cystic Fibrosis? And it's a long, involved answer. CF isn't a simple disease, and there are so many parts of the body that if effects. But here are some important things to know about the disease:
* CF is a genetic disease where BOTH parents need to carry the CF gene in order to pass it along to their child. If both parents have the CF gene, there is a 25% change a child will have the disease (think back to high school biology!). Neither Darryl nor I knew that we carried the gene for CF. Also, there are thousands of different CF gene mutations out there! Kennedy happens to have one copy of the most common mutation, and one that is extremely rare- which will make it harder for her to qualify for many of the new medicines aimed at targeting the underlying cause of the disease.
* CF mainly affects a person's lungs. A defective gene in a person with CF causes fluids in their lungs to become thick and sticky which means more coughing, more wheezing, and chronic lung infections. In fact, many people with CF end up getting lung transplants later in life due to their lung function dropping to extremely low levels.
* CF does not just affect a person's lungs. It actually affects every organ in the body, except for the brain! Besides the lungs, the digestive system is the second mostly affected part of the body. Many people with CF cannot get all of the nutrients from their food and actually have to take medicine every time that they eat in order to be able to do so!
* CF is not contagious sort of. CF is not contagious to someone that doesn't have CF. However, people with CF cannot be around each other because they can pass dangerous bacteria to each other. In fact, only one person with CF is allowed to attend any CFF fundraiser that is indoors because of this. In addition, at outdoor events, people with CF must stay at least 5 feet away from each other! You will see Kennedy wearing a neon sticker for this reason- to alert others with CF not to come near her.
* CF is considered a life shortening disease. CF is a progressive disease, so as Kennedy gets older; it is likely that she will experience more and more issues, especially relating to her lungs. However, with the help of the CFF, there are so many amazing medications out there right now, and in the works, that will help prevent this from happening! And wow- are they making progress!! 50 years ago, the life expectancy of someone born with CF was only a few years old. Today, someone born with CF is expected to life until the age of 40.
* It is estimated that 1 in 23 people the CF gene, many of whom do not know it (Darryl and I didn't know we did!). Do to the high number of gene carriers, CF is considered the most common rare disease.
* People with CF lose more salt from their bodies when they sweat. Kennedy actually needs to eat more salt than the average person to compensate for this. Many people with CF are known to have salty skin- and it is rumored that in the middle ages, children with salty skin who passed away at young ages were considered hexed or cursed.
How does this affect Kennedy now?
Well, we do many preventative treatments. Kennedy does something called a "vest" for 40 minutes every day. She wakes up early (and not easily!) before school and does her vest for 20 minutes, and does her vest for 20 minutes before bedtime. We also do nebulizers for 15 minutes in the morning and 15 minutes in the evenings. Kennedy also sees a specialist every 2-3 months at UNC where they monitor her lung function.
In 2017 and the beginning of 2018 we experienced a lot of breathing related problems with Kennedy. Her pulmonologists at UNC put her on several different medicines, but we were not able to get it under control, which as a parent, can be a scary thing. Kennedy ended up being on steroids for wheezing and breathing difficulties about every 5-6 weeks (doctor wants to only see her on this 2 times a year!). Every time we went to UNC we would leave with more medications, and higher dosages.and we wouldn't see any improvement. Luckily, in March of 2018 we were approved for a medicine which has been a GAME CHANGER for Kennedy! Kennedy goes every month and gets 2 injections (and takes them like a champ! No tears!). Since we started this, Kennedy has only needed steroids ONE TIME! And we've come off of so many medicines that had been added to her daily regime! Kennedy is needing her inhaler so much less!
Now that you know a little bit about Cystic Fibrosis. We hope that you'll join us on Saturday, May 16th at 9am at Halifax Mall in downtown Raleigh. It's a fun, family friendly walk and event! We have a blast each year and so do all of the kids! We also hope that you'll consider making a tax-deductible donation to the Cystic Fibrosis Foundation and Team Kure for Kennedy. All of the donations truly go towards helping extend the life expectancy and qualify of people just like Kennedy!
Click "Join This Team" or "Donate to a Team Member" to help support us!