Hi everyone
My name is Bill. Our 13-year-old grandson, Aiden, is suffering from Metachromatic Leukodystrophy (MLD).
MLD is a rare genetic disorder that causes progressive damage to the nervous system, leading to severe loss of motor skills, seizures, and cognitive decline. With the disease advancing rapidly, Aiden is already struggling to walk, feed himself, or even sit up independently. Specialists warned that life expectancy is tragically short—often only into the mid-twenties
His parents are heartbroken and desperate to slow this relentless disease. After countless sleepless nights, they found hope in a groundbreaking gene therapy called Lenmeldy, offered by a specialist hospital in Boston. They confirmed Aiden is eligible for this one-time treatment, which could stabilize his condition and buy him precious time. But the cost is staggering:$3.5 million for the therapy alone, plus additional expenses for a months-long hospital stay and ongoing monitoring.
Why We Need Your Help
We’re racing to secure Lenmeldy gene therapy for Aiden, a one-time, $3.5M treatment not covered by insurance but proven to halt MLD’s devastation. This therapy replaces his defective gene using modified stem cells, giving him hope to laugh, play, and grow.
Time is critical: Aiden’s eligibility window is closing. We must raise enough funds to cover therapy, hospital stays, and monitoring.
How You Can Help
We never imagined asking this way, but we’re out of options:
- Donate any amount - every dollar brings us closer to saving Aiden.
- Share his story - your voice could reach someone who can help.
This is our last chance to hear Aiden’s laughter, watch him start school, or see him chase dreams. We can’t lose him to MLD. From our hearts, thank you for standing with us.
With gratitude,
Bill White & Family
