Second Year Birthday
Happy Birthday Landon
Two years ago, we welcomed the most joyful little boy into the world—Landon Walker Dean Weir. Just two weeks later, he was diagnosed with Schaaf-Yang Syndrome (SYS), a rare and complex genetic disorder caused by a mutation in the MAGEL2 gene. This mutation produces a faulty protein that disrupts cell function and leads to a wide range of symptoms, including developmental delays, feeding difficulties, hormone deficiencies, and respiratory issues.
There are currently fewer than 500 people worldwide diagnosed with SYS. Research is limited, and the primary source of funding has been through determined, family-driven efforts like ours.
This past year has brought challenge after challenge—feeding struggles, lack of weight gain, endless appointments, therapies, and advocacy. But through it all, Landon has remained our bright-eyed, giggly, and determined little boy. He loves lights, Bluey, round objects, soft toys, his own hands, and sharing smiles with everyone he meets.
Despite the daily hurdles, Landon works hard in therapy and inspires us with his resilience. Now, we have a reason to hope for a cure.
We’re thrilled to share the launch of GeneSYS—a groundbreaking research initiative from FPWR aiming to develop the first-ever treatment for SYS. This bold effort will:
Screen potential ASO drugs to eliminate the harmful MAGEL2 protein
Test the most promising candidates
Lay the foundation for a viable treatment
We’re at a turning point. Our family is fundraising to support this life-changing research, and we need your help. Every donation—big or small—brings us closer to a future where SYS symptoms can be reduced or even eliminated.
Your kindness helps give Landon and others like him the chance to keep dreaming, keep growing, and keep fighting.
Thank you for your support—and please consider sharing this with others who might want to help us reach our goal.
Donate here:
