Operation Uplift: Crusade For Cole

Cole's Story

From the time he was old enough to hold a ball, Cole has loved baseball. He began playing at the age of 3 and played every season, until the winter of 2021. Cole has done it all, T-ball, Little League, Travel Ball, All-Stars, and Cooperstown. Cole loved all things baseball, and he was amazing at it. As a left-handed pitcher, he was a natural and his friends were thrilled if they could get a hit off him.

In addition to baseball, Cole has always been outgoing and excited about life. He has a love of music, he genuinely cares about others, and has a sweet way of endearing himself to everyone he meets. He's never thought twice about striking up a conversation with someone new to discuss sports and music.

In October of 2020, it was just another Saturday morning. Cole was getting ready for a day of baseball but things changed quickly. Cole had a Grand Mal Seizure. He had never had a seizure and it was very scary. He was transported to the Emergency Room and after several tests was determined "okay" to go home. After consulting with a neurologist and more testing and medication, life continued on as usual. After about 3 months, the seizures returned and months were spent trying to get them under control. During this time Cole's speech slowed down, he lost interest in almost everything including his favorite team, the Tampa Bay Rays. No longer was Cole his happy and outgoing self. He became very quiet, and he lost his spark. The Cole his family had known for 14 years was gone.

In September of 2021, Cole was officially diagnosed with Niemann-Pick Type C (NPC). A ultra rare genetic disease for which there is no cure nor any approved treatments. The way it was explained to the family was to imagine if Cole had ALS, Alzheimer's, and Parkinson's Disease all at the same time. Needless to say, his and his family's lives were changed forever.

With the help of doctors and the NPC community, Cole's family was able to get him into clinical trials that would hopefully slow the progression of the disease. While it took a few months to get his dosage correct, the family started to see some positive changes. Cole’s hand tremors slowed, he began to find interest in things he had previously loved, he wanted to watch baseball again, his speech improved, and most importantly, he found his spark again. He was the happy, sweet kid again, albeit, with some big changes.

This past summer, through Make-A-Wish, Cole was able to throw out the ceremonial first pitch at a Tampa Bay Ray’s game. He was so excited and had the best day watching his favorite team and meeting his favorite players. The following weekend Cole attended Camp Boggy Creek, a sleep-away camp for children with serious medical needs. It was the first time since his diagnosis he attended a camp and had the opportunity to make lasting friendships.

If NPC has taught his family anything, it is to expect nothing and appreciate everything. Each day is spent trying to make life as "normal" as possible for Cole while making memories of every experience. Cole brings such a joy, he truly is a spark of love that keeps his family going.

All monies will go toward Cole's medical bills and making his home ADA compliant for his needs to live safely and as independently as possible at home.