Lysa Hulse

This is my Sweet "Baby" James.  James is 9 years old and loves Star Wars, Jurassic World, Pokemon, Minecraft, Roblox, sharks, superheroes, LEGOS, cars, and dancing to show us his "cool new moves". He is a silly, energetic boy who loves to make people laugh, and says "I love you" daily.  He loves pad Thai, pizza, and McDonalds.  

James also has Cystic Fibrosis.

CF causes a thick sticky mucus in his lungs and intestines. He struggles with every breath he takes and his body cannot properly absorb nutients from food without the assistance of pancreatic enzymes before every meal and snack, for the rest of his life. Today at 8 years old, James takes over 700 pills a month, simply to aid in digestion. Additionally he does breathing treatments twice per day to help break up the mucus that is in his lungs. With weight gain being a struggle for much of 2017, our family opted to place a feeding tube into James' belly in order to give him night time feedings of upwards of 900 calories each evening while he sleeps. In the fall of 2018, James started taking a breakthrough drug called Orkambi, which is a CFTR modulator.  Orkambi helps to restore some of the function of the cells which is the underlying cause of CF.  The following year he began Symdeko, a more advanced CFTR modulator, to replace Orkambi. Now he takes Trikafta, the newest CFTR modulator currently available. With surgeries and hospital stays under his belt, James is a brave CF warrior! 

The Cystic Fibrosis Foundation is doing incredible work researching breakthrough treatments, and assists in getting affordable medications for James. Currently the average life expectancy of a CF patient is 53 years old which has increased substantially in the past 40 years when CF patients often did not live long enough to reach Kindergarten!! Just 10 years ago, the average age was 38.

However, there is still so much work to be done.

Please support James.
Help me reach my fundraising goal by donating any amount that is comfortable for you, 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.

Love,

Lysa