March 2023, our daughter Ruby was diagnosed with GATAD2B-associated
neurological disorder. We had a healthy pregnancy, uneventful delivery,
and no known history of genetic conditions. After 4 months of testing
and searching, we were shocked to learn that Ruby has a rare
neurological disorder that will affect her cognitive development for
Most patients affected by GAND have
speech apraxia, low muscle tone, and varying degrees of health and
feeding difficulties. With only 310 known cases worldwide, we felt
helpless, desperate for information, and alone — until we found Helping
Hands for GAND.
Hands for GAND is a volunteer-run nonprofit organization that funds and
champions research grants, patient registry development, accessible
information, and research-led conferences for the GAND community.
They're committed to providing resources, making connections, and
advocating for future research on behalf of patients affected. Though so
much is unknown, and we take Ruby's progress one day at a time, Helping
Hands offers a sense of community and hope — an 'onwards and upwards'
mentality that keeps us pushing forward.
path will be a different one, but no less full or large. She may never
communicate or move in the way we imagined, but we're determined to fill
her world with fun, laughter, love, and energy. We're committed to
giving her the opportunities, therapy, and care she needs to succeed.
Through Helping Hands, we're grateful to be connected to parents from
around the world who have these same dreams and aspirations — who want
nothing more than for their children to live full lives and have access
to information and resources.
Helping Hands is just scratching
the surface and we look forward to supporting their mission for years to
come. We can't thank you enough for your generosity and willingness to
do the same — it means the world to us.
Ruby, Kelsey & Aidan
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