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The biggest birthday ever

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1.2 from 4 votes
Thursday, September 17, 2009

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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.

Copyright 2009 Associated Press

Author: By Samantha Swindler
Source: The Times Tribune
1.25
1.2 from 4 votes
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