Most parents imagine a bright future for their children--them growing up and meeting many milestones, going to school, making friends, getting a job one day, getting old... That will not be the case for Matthew unless we can get him a treatment soon. His brain and body are dying, and the condition he has will likely end his life before adulthood. We are fighting for his life and the one thing standing in the way is funding. We need your help to save Matthew.

Our Story

Our son Matthew is a sweet and playful kid, loving his family deeply. He adores his brother Nathan, saves treats for Mommy, requests piggyback rides from Daddy, and prays for his grandparents nightly. His big grin warms every heart, and he can be seen toting around his favorite Baymax pillow everywhere.

Matthew's life began with challenges due to multicystic dysplastic kidney syndrome, and at 2 years old, he started early intervention due to mild expressive speech delay. A few months later, impaired hearing and ear fluid led to genetic testing, from which we expected negative results. We could never have imagined what would follow.

A week later, the genetic results confirmed Sanfilippo Syndrome Type B, a rare, neurodegenerative and terminal disease caused by a missing enzyme needed to recycle waste in the cells. As a result, toxic material builds up in the brain and other organs, leading to progressive damage and eventual early death.

Our hearts were shattered. I cannot explain the unimaginable grief we felt, to know that our sweet and vibrant son who loves to sing, laugh, and play -- will soon lose the ability to think, talk, and move, dying after just a short time in our lives. This was the most difficult and daunting thing we have ever faced.

We have spent the past 1.5 years navigating the world of rare disease -- talking to doctors and researchers, going to appointments and therapies, fundraising, advocating, and searching far and wide for help. Any help.

We quickly learned that Sanfilippo Syndrome Type B has NO cure, NO treatment, and NOTHING accessible in the clinical trial stage. It seemed unlikely Matthew would receive any treatment before irreversible decline set in.

A Window of Opportunity

However, in just the past few weeks, a rare window of opportunity has opened up. For the first-time ever, a potential treatment for Sanfilippo Syndrome Type B is on the horizon and within reach. We realize this is a crucial, God-ordained moment, with a narrow window of opportunity to make a difference.

A company has agreed to create an early access program that would allow a number of Sanfilippo Syndrome Type B children to receive enzyme replacement therapy before it obtains FDA approval. This treatment would provide the very enzyme our children's bodies cannot produce -- helping them stay healthy and potentially slowing or even preventing decline.

To move this treatment forward, $6 million total is needed, with $3.8 million required by Thanksgiving to take the next critical step.

Our family has decided to step out in faith and partner with other Sanfilippo Type B families to fundraise for this cause -- because this is the only possible option available right now to save Matthew and other Sanfilippo Type B children.

We're asking you to walk with us. While we can't guarantee the outcome for Matthew and other children, we know we cannot miss this. This treatment could pave the way for dozens of children and redefine the future for families affected by this diagnosis. It's a chance to change what's possible for those who come next.

How You Can Help

Follow Our Journey

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