Stephanie Halvax

Many of you know our story and the ups and downs of Cole's journey over the last 21 years. For those of you who don't, continue to read Cole's story. Some of you will be surprised to find out Cole is not a normal 21 year old young man.  His daily routine of medications and pulmonary therapy allow him to be the "normal" young man we see everyday. And that is the amazing gift we have had over the last few years...Normal worries and experiences for parents of a young adult. Thanks to research and new drugs on the market to treat people with CF.

Coles Story
Paul and I were given some incredible advise from the CF clinic the day after his diagnosis. They told us “You have a choice…you can make Cystic Fibrosis Coles whole life or you can make it a part of his life”. Our first impulse was to keep our child in a bubble, don’t let him get sick, but we wanted Cole to live his life. We wanted Cole to have every experience life had to offer, so we decide to make CF a part of his life. Not to say the first runny nose play date didn’t scare me, or the first day at daycare. As his parent that was my job to figure out what I needed to worry about and what he needed physically, emotionally and socially. And we never lied to him about his disease.

Cole had failure to thrive by 2mos. of age and by 18 months received a feeding tube to supplement his diet. He just could never gain weight and grow at an acceptable rate. He has had numerous hospital stays, and a couple of pic-lines for IV antibiotics. Paul and I have been very ridged about his medications, his breathing and vest treatments. We stress the importance of his routine so he can be “normal”, and do all things his friends do. CF is a part of his life but taking care of his health is the most important thing so he can LIVE his LIFE!

Cole is almost 22 years old! A senior at SUNY Albany majoring in biology. He’s still focused on having a future in medicine. I think that many of his experiences with CF have molded him into the person he is today. Doctors don’t scare him or intimidate him but have inspired him into becoming a provider himself. His knowledge of his disease is extensive. At about 10 he understood the full reality of his disease. Let me tell you that explaining the term "life expectancy" was one of the worst conversations we have had to have. When he was about 11 he found out about the Kalydeco/ Ivacaftor drug being developed by Vertex. He was very eager to get in the study, but had to wait until he was 12. While he waited we made sure he educated himself on the study drug and what it meant to be in a study.

Eight years ago the FDA approved the study drug, Orkambi (Kalydeco/ Ivacaftor), that Cole has been on for almost 10 yrs. For the past two years he’s been on a triple combination drug that has been approved by the FDA and has been life changing for CF patients. This new combination drug still targets the mutated salt channel that causes the symptoms of Cystic Fibrosi, but the results are far better then his previous drug. With the advances in medication we may be able to fix the mutation and thus fix the disease! Cole feels great and is very optimistic. Cole has had a feeding tube since he was 18 months old and this drug has made such an impact on his nutrition that we are now talking about removing his tube. So exciting!

Cole will tell you that he doesn’t want any one to feel sorry for him. He wants people to see the results of the CF foundations hard work! He will tell you he has hope, and feels very fortunate, and hopes that his story gives others hope for the future. 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.

Though I know times are tough for many, I hope some can help support a great cause like CF. No amount is too small.

Please support my family and Cole!

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.

Tara & Paul Halvax