FOR IMMEDIATE RELEASE:
April 17, 2013
MEDIA CONTACT:
Anna Grantham
Hunter’s Hope Foundation
Office: (251) 300-4321
[email protected]
HOW ONE TERMINALLY ILL BOY SAVED HIS BROTHER’S
LIFE AND COULD SAVE COUNTLESS OTHERS
An Oregon family is using personal tragedy to ask
state lawmakers to mandate a lifesaving newborn screen
Dayton, OR – Just looking at brothers Marshall and Michael Wilson, one would never know
that both are affected by the same genetic disorder, Krabbe Disease. Marshall, 3, is extremely
impaired in an almost vegetative state while his younger brother Michael is a thriving and very
active two-year-old.
The difference? Michael was diagnosed with Krabbe in time for treatment. Tragically, his older
brother Marshall was not.
Marshall developed like a typical, healthy toddler until he began displaying unusual neurological
symptoms a few months after his first birthday. He was diagnosed with Krabbe one month after
the birth of Michael, who was immediately tested for the genetic disease. Because he was
diagnosed before he became symptomatic, Michael was able to receive lifesaving treatment
through an Umbilical Cord Blood Transplant, which halted the progression of the disease.
“No parent should have to lose one son to have the opportunity to save another,” shared the
boys’ mother, Tammy Wilson. “Michael is healthy with his whole life ahead of him, but his
older brother, Marshall, is dying,” she continues. “Had Krabbe been included in Oregon’s
newborn screening program when Marshall was born, he could have had the same chance at life
as his little brother.”
The Wilsons are asking Oregon lawmakers to mandate the addition of Krabbe to the state’s
newborn screening panel. If passed, Senate Bill 284 will ensure all babies in Oregon are screened
for Krabbe and five similar disorders at birth. The Hunter’s Hope Foundation out of Buffalo,
NY is also working in support of the Wilson’s effort.
“We applaud the Wilson’s work in Oregon,” said Jim Kelly, Co-Founder of Hunter’s Hope and
NFL Hall of Fame Quarterback. “I don’t see how anyone could hear their story and not do
- more everything in their power to make sure no other family goes through what they have. It’s time
for Oregon lawmakers to step up and do all they can to pass SB 284 this year.”
Jim Kelly and his wife Jill, founded Hunter’s Hope in 1997 after their infant son, Hunter
(2/14/1997 – 8/5/2005) was diagnosed with Krabbe, the same disease that affects the Wilson
brothers. Due in part to the work of Hunter’s Hope, New York and Missouri screen for Krabbe at
birth and many other states have passed laws similar to the legislation the Wilson’s are proposing
for Oregon.
Krabbe is a genetic and fatal neurological disorder. If untreated, affected children retain all
cognitive function as they suffer greatly and progressively lose voluntary muscular movement,
including the ability to walk, talk, and even swallow, leaving the child completely immobile until
they eventually die.
To learn more about Krabbe, other Leukodystrophies and how to become involved in making a
difference through expanded and universal newborn screening, please visit
www.huntershope.org.
About Newborn Screening
Newborn Screening is a state-based public health system. All babies born in the U.S. receive
newborn screening; however, the number of diseases a child is screened for is dependent upon
the state in which the child is born. Because many diseases can be treated if detected early
enough, expanded and universal newborn screening programs are essential for giving every child
a fair chance at a healthy life.
About the Hunter’s Hope Foundation
The Hunter’s Hope Foundation was established in 1997 by Jim Kelly and his wife Jill, after their
infant son, Hunter (February 14, 1997 – August 5, 2005) was diagnosed with Krabbe
Leukodystrophy, an inherited fatal nervous system disease. While Jim and Jill have been blessed
with the opportunity to share Hunter’s story and the hope of the Foundation named after their son
all over the world – their greatest passion is to bring encouragement and hope to families in the
midst of suffering. The Foundation’s mission and focus is threefold: to fund research necessary
to treat and cure Krabbe Disease as well as other devastating leukodystrophies, increase newborn
screening standards across the United States to obtain early detection and treatment for all
treatable diseases, and ultimately Hunter’s Hope exists to inspire all parents to thank God for
their children.
www.huntershope.org
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