Hope for Kyrie! Hope for CHOPS Syndrome!

Hello! My name is Kayla and I am the mom to a fun-loving, rambunctious 5-year-old named Kyrie. Kyrie is also diagnosed with an ultra-rare genetic disease called CHOPS syndrome. CHOPS stands for cognitive delays, heart issues, obesity, pulmonary issues, and short stature. There are only 28 kids in the world diagnosed with this condition so we do not yet know the quality of their adult life and there is currently no treatment.

Kyrie's journey has not been easy. At 1 month old, he had heart surgery to fix a heart defect, was on oxygen support until 10 months old, has bi-lateral hearing loss, struggles with obesity and managing his appetite, has been hospitalized when catching common colds, is non-verbal and didn't start walking until he was 4 1/2. Despite his challenges, Kyrie still manages to enjoy life, bring joy to those around him, and work hard to improve his abilities. He is my little warrior. But we need your help!!

Currently, there is cutting-edge research going on giving families in the Rare Disease communities hope.

Companies like Rarebase, a biotech company in San Francisco, are developing cutting-edge AI technology to discover and develop treatments for the millions of kids worldwide living with a rare diseases. The exciting part of this research is there are many already approved FDA drugs being repurposed to help kids with rare diseases. But the research to discover these drugs for CHOPS is expensive.

Our community is trying to raise 300K so that we can partner with Rarebase. If we can find a drug that can slow down the progression of CHOPS Syndrome, there is potential to improve our kids' verbal skills, lung disease, growth and intellectual abilities. But the clock is ticking for my son and others. The older our kids get the less chance that any interventions will help. Will you please consider a donation to help Kyrie and all the other families in our CHOPS community in this fight to save our kids.

If you could donate any amount, we would be so grateful. To date, our community has raised over $75k but we need your support to get over the finish line.

Kayla and Kyrie

For more information on CHOPS, visit our website: https://www.chopssyndromeglobal.org/

For more information on Rarebase: https://www.rarebase.org/