This is my sweet nephew, Clark! He is the 4-year-old son of my sister and brother-in-law, Cloey and Japheth. On December 10, 2024, they received devastating news that is every parent's worst nightmare - Clark was diagnosed with a rare and terminal genetic disorder, MPS III, also known as Sanfilippo Syndrome.

Sanfilippo Syndrome is a neurodegenerative disease that is often referred to as “childhood Alzheimer’s” because it causes symptoms similar to Alzheimer’s, only in children. This syndrome is caused by a single gene defect, which leads to a lack of the enzyme in the body needed to break down cellular waste. Over time, the waste builds up, interfering with their function. While all parts of the body are impacted, the brain suffers the most.

At this time, Clark continues to develop and learn, but as time goes on, Sanfilippo Syndrome will impact his cognitive functioning, causing him to gradually lose the abilities and skills that he has learned, such as walking, talking, and feeding himself. Children typically do not live past their late teens or early 20s.

Currently, there is no FDA-approved treatment, and all we can do is love him fiercely and make sure he has the best life possible while fighting like hell for an approved treatment. Clark currently participates in services (physical therapy, speech therapy, and occupational therapy) to help support some developmental deficits while he is still progressing and learning.

The unknown is scary. This syndrome looks different for every child, but we continue to hold onto hope of a treatment or cure for Clark in the future.

Cloey and Japheth are going to need financial help as Clark’s medical needs increase. The funds raised from this GoFundMe will go to the services Clark is currently receiving along with future expenses such as medical needs, home modifications, and travel expenses for a specialized Sanfilippo treatment team or clinical trials.

Cloey and JP have connected with an amazing foundation called Cure Sanfilippo Foundation. This foundation is a U.S. registered 501(c)3 non-profit (Tax ID 46-432131), advocates for and funds research to accelerate discovery of a cure for Sanfilippo Syndrome.

• Much more research is needed and more clinical trials as soon as possible, as the clock is ticking for these children.

You can read more on Clark’s Family Page - Cure Sanfilippo Foundation and make donations to the foundation in his name. Or you can purchase clothing to support Clark and raise awareness through Clark’s Boutique.

Like/follow/share Clark’s Facebook page to follow along with the journey to a cure

https://www.facebook.com/share/12FxPSPvUkg/?mibextid=wwXIfr

Thank you for your support!