Cystic fibrosis (CF) is a life-threatening genetic disease that primarily affects the lungs and digestive system. An estimated 30,000 children and adults in the United States (70,000 worldwide) have CF.
Jake, our dinosaur loving, dragon drawing, 6 year old happy son. At the time, we knew nothing about cystic fibrosis. I am hoping to spread awareness and raise money, so that CF will someday stand for cure found. Jake lives his life like every other child, but takes multiple medicines, does many therapies throughout the day, and is at high risk for lung infections. We are hoping that with all the research and new medicines (found because of donations from fundraising) that some day Jake will no longer have to do all of this!!
Jake has been nothing but the best little guy from the start!! He is always smiling and laughing... He loves his vest to do his treatments and has been a trooper since day one with all of his therapies! He loves drawing, cutting out his masterpieces, playing with his dinosaurs, and play doh just to name a few. He also loves being outside and enjoys our yearly beach trips!!
In March 2015, Jake started a new drug known as Kalydeco that has completely changed his life. Kayldeco is a drug that actually helps the underlying cause of cystic fibrosis. We are so thankful and call this drug our miracle drug. Our hope is that someday this drug will be available to everyeone and I also feel this just gets us one step closer to a cure.(only certain genes are able to take kalydeco) People with CF have a very difficult time gaining/keeping weight on. Jake went from the 16th percentile before starting this drug, to the 95th percentile in height and weight!! These past year has truely been a miracle. Jake has been so much healther and we have seen such great changes since starting Kalydeco!! We couldn't thanks the Cystic Fibrosis Foundation(and Vertex Pharmaceutical) enough and this is why we fundraise so hard!!
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!
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.