September 16, 2009
The biggest birthday ever
By Samantha Swindler / Managing Editor
Molly Grace Jordan’s sixth birthday will be the biggest yet, because
doctors fear it may be her last.
Of course, they’ve been saying that for three years now, not long
after the child was diagnosed with a rare genetic disease known as
Tay-Sachs.
The community is invited to her birthday party at 3 p.m. Saturday at
Lynn Camp High School. The circus-themed party will include inflatable
games, cornhole, clowns, ring toss, cotton candy, popcorn, snow cones
and funnel cakes.
The Shriners are also bringing their mini-trucks — tiny semis you may
have seen at the Nibroc or World Chicken Festival parades.
“We always done a big birthday party for her because she’s really
short on life,” said her father, Mark Jordan of Gray. “It’s just gotten
bigger over the years, and this is the biggest.”
Mike Yeager has loaned a cotton candy machine, and the West Knox
Volunteer Fire Department is allowing the use of a snow cone maker. Tip
Messer is bringing the funnel cakes.
All area children are invited Saturday, with a special emphasis on
those with disabilities, Mark said. He’s expecting anywhere from 100-200
people.
Molly herself will be there, though she is now blind and unable to
speak or move due to her disease. She can hear and feel, Mark said, and
her family keeps her surrounded by soft and comforting stuffed animals
and blankets.
“Her lungs are getting so weak that they can’t support themselves,”
Mark said. “We have to turn her every two hours to keep her lungs from
collapsing.”
Doctors have told Molly’s parents she has one or two months left, and
“three months would be a miracle.”
Molly was born a normal, albeit premature, baby. But over the few
months of her life, her mother Bridget noticed she wasn’t meeting the
normal milestones of a child’s development. At 9 months old, Molly was
diagnosed with spastic diplegia, a form of cerebral palsy that affects
the legs, but she still had control and use of her hands. Yet, within
another few months, those abilities also deteriorated. At about 17
months, she began to lose head control.
A month later, she was diagnosed with Tay-Sachs, a disease that
prevents the body from producing an enzyme called Hexosaminidase-A and
prevents fatty substances from accumulating in nerve cells of the brain.
By the time affected children are 4 to 5 years old, the nervous system
is generally so badly damaged they can no longer live even with
treatment.
“We were one of 16 in the world (diagnosed) that year — a really
crappy lottery we won,” Mark said.
Her father compared Molly’s deterioration to, “being in a house with a
bunch of light switches, and every time you turn one off, it don’t come
back on.”
There is no treatment for Tay-Sachs, but it is preventable. A blood
test can identify prospective parents as Tay-Sachs carriers. According
to the National Tay-Sachs and Allied Diseases Association, a carrier of
the gene has a 50 percent chance of passing it on to his or her
children.
If both parents are carriers, the child will inevitably be born with
Tay-Sachs because two inactive recessive genes cause the child to be
unable to produce the Hex-A enzyme. If a blood test identifies both
parents as carriers, the family can seek other options for bearing
children, such as in vitro fertilization.
Since Molly’s diagnosis, her parents have become advocates for
Tay-Sachs awareness. They asked Gov. Steve Beshear to name September
Tay-Sachs Awareness Month in Kentucky, a request that he granted.
Molly’s struggle has brought her family, including two half-sisters,
closer than ever.
“I guess I’m a stronger person for watching her go through what she’s
been going through,” Mark said. “I don’t complain as much as I used
to.”
More on Molly’s story can be found at
http://www.caringbridge.org/visit/mollygrace.