My Xtreme Hike Story
How far would you go for a cure?
I am participating in my 5th VA Xtreme hike. It has been an amazing journey. I cannot thank enough the hike leaders, volunteers and CF staff for making this event what it is. We are all a big family now and most of us keep on coming back (I guess we all forget every year how though it can get to hike 30 miles in a day!)
Thomas is now 14 years old. A typical teenager, he loves playing sports (especially basketball), hanging out with friends, playing games and creating with Lego! Thomas still has Cystic Fibrosis, (CF) a life-shortening, inherited chronic disease that affects the way in which salt and water move into and out of the body’s cells, affecting the lungs & the digestive system.
Today, Thomas is healthy. As he ages, the size and the number of pills increases, now 29 pills a day. He still does one hour of Vest Therapy, along with Albuterol, two nebulizers, and an inhaled powder. He still goes to Johns Hopkins every three months for clinic visits.
On July 15, 2015, Thomas was lucky to be one of the first to take Orkambi, a drug that targets the underlying cause of CF. Since, he has gained an amazing 10% of Lung function (back at 90%).
Thomas has been struggling with more stomach issues and pain, and for the first time, has had trouble maintaining weight (even with his diet high in fat, calories, and salt.) Thomas eats twice as much as us!
We are very lucky that Thomas has access to these life-saving drugs and therapies. But we need more. Living with CF is a challenge, a constant race to try to be ahead of the disease. As Thomas ages and CF progresses, today’s drugs and therapies will not be enough. There is NO CURE
Without government funding, we rely on our family, friends and community to raise awareness and funds for CF. This is why we do all we can to support the Cystic Fibrosis Foundation (CFF)
Thank you for your support and generosity and know that every little bit helps.