Kaylee Wolfe

My Great Strides Story

Cystic Fibrosis is a genetic disorder that affects more than 30,000 individuals in the United States alone, one of those individuals happens to be my son, Paxton. Paxton had a very rough start to his life. Being born at 33 weeks, 7 weeks early, Paxton battled with issues of prematurity as well as a disease that was raging inside of his body, Cystic Fibrosis. For the first days of Paxton’s life he was unable to pass his meconium (an infants first bowel movement). After many enemas and x-rays it was determined that Paxton had Meconium Ileus and Jejunal Atresia, both conditions that share a connection with CF and caused a twist in Paxton’s bowel, not allowing his meconium to pass. Because of this it was decided that Paxton needed surgery at just a week old to cut out the twist and “dead” portion of his bowel and then re-sect it. Paxton fought his way through the surgery successfully, but still had a long road of recovery ahead of him. Because of the surgery and the amount of his intestine that was cut out, Paxton would be considered “short-gut” which would pose many issues when it came to nutrition and feeding. Over a two month period, Paxton was a patient in Nationwide Children’s NICU. During this time he struggled with weight gain and the ability to properly digest his food.

After over two months spent in the NICU Paxton was considered stable enough to move to the Pulmonary floor at Children’s so that his Cystic Fibrosis issues could be addressed while he was still dealing with his problems in proper nutrition and digestion from his “short gut” syndrome. In the next few months spent on the Pulmonary floor, Paxton was introduced to what would become his daily treatments in combating his CF. Airway clearance, inhaled medications, enzyme supplements, these terms and treatments became a part of Paxton’s everyday routine and will continue to be for the rest of his life. During this period, it was also suggested that Paxton receive a g-tube in order to aid in his nutrition and digestion. So at just under 4 months old, Paxton underwent another surgery for his g-tube placement. There were many obstacles to overcome, and many issues that would still arise, but after about another month, Paxton was strong enough to come home, FINALLY! Once home, Paxton flourished! He was gaining weight consistently and coming off of all kinds of medications he had been prescribed throughout his hospital stay. Eventually, he was even able to have his g-tube removed.

Paxton continues to do well and grow. He is a happy, beautiful, smart little boy. And I cannot tell you how many times I’ve heard “you can’t even tell that there is something wrong by looking at him”, and that statement is true, he does “look” great and healthy. But unfortunately that is not the case, Paxton still has Cystic Fibrosis and that cannot change without a cure. Cystic Fibrosis is a progressive disease, which means that it will only get worse as Paxton goes through life. So that is why it is so important for awareness to be spread and money to be raised! The Cystic Fibrosis Foundation receives no government funding, so all of the money it receives is from fundraisers and amazing events like Great Strides! These funds go directly toward research for things like treatment therapies and drug development that benefit people living with this life threatening disease and also, more importantly, these funds pave the way for a cure to be found. That is why, even though it goes against my natural personality, I ask and will continue to ask every year for donations and support. So please, if you can, donate toward this cause and show your love and support for my amazing Superman; Paxton!

Your support makes a difference.

By donating to my fundraising goal, you will help advance our mission for a cure for all. Please consider joining us and helping make CF stand for Cure Found.