Chandler Moore, a boy with a rare disease will be getting the love and support he needs at an annual event in his home town of Georgetown, Salisbury.
Chandler’s Chance Christmas Palooza For Cystinosis is on its 5th year. The fun-filled event will feature hay rides, fire truck rides, a photo booth, and celebrity guest appearances from Mr. and Mrs. Clause themselves. Every year, hundreds of people flock to this event to support Chandler Moore and his debilitating disease
Cystinosis is a genetic disorder that results in the build-up of crystallization of the amino acid, cystine, in cells of the body. If not taken care of right away, it can lead to organ damage, kidney failure and even death. To learn more about cystinosis, click here.
Chandler feels the love, as his classmates are all excited for the event that’s held in his honor. He’s excited to spend time with his friends and forget about his disease for a while. When he’s around them, he’s able to act like a regular kid, but when he gets home, the medication intake begins.
The annual Christmas Palooza events feature several sponsors, but this year it will usher in Leadiant and Horizon Pharma.
There have been several breakthroughs in the disease over the last decade. Chandler has three medications that are aiding him against the disease.
“Ultimately those drugs were created because of events like this held all over the country. People raising money and donating it to the organizations that dump it right back into research. That’s the only way you can make things happen,” said Chandler’s father to ABC News.
There is still a lot of work that needs to be done, in terms of better medication. This will take more education and activism.
Last year, Chandler’s Christmas Palooza garnered over 500 guests. He is grateful for the outpour of love by his community.