A Reason to Fight
It is hard to imagine anything more devastating than a new mother being told
that her baby has a brain disease and will die after battling prolonged respiratory
illness, blindness, severe disabilities, and seizures.
Our son, Max Randell was only four months old when diagnosed with Canavan disease.
We wasted no time rallying together to fight for his life. Rather than accept
the prognosis and put our beautiful baby boy in an institution as recommended
by the doctors, we were determined to help our son live the happiest, longest
and healthiest life he possibly could.
Our commitment to Max has taken us on a
life-altering journey through clinical trials for experimental medicine, fundraising,
lobbying in Washington D.C., intense media relations, advocating for Max, and
mentoring several other families along the way.
The fight to give Max and other children battling Canavan disease, access to
the most ambitious research and treatments that can be found, has given way to
breakthroughs in gene therapy, which can potentially help millions suffering
from neurodegenerative diseases.
happy boy worth fighting for; Max shares
a laugh with Mom, CRI President, Ilyce Randell and "Gammie," Vice
President, Peggy Shapiro-Nyeholt
with Dad, Secretary, Mike Randell