Published: May 15, 2006 03:21 pm      

All for Molly

“The tattoo’s not painful, but watching your daughter die slowly is.”

CORBIN — The low, steady buzz of the tattoo gun and the conversation of friends and family never disturbed the peaceful rest of Molly Grace Friday.

The two-and-a-half year-old girl’s daddy, Mark Jordan, winced occasionally while telling others about his daughter’s struggle with a terminal disease. Mark gripped a photo of his daughter in his left hand while tattoo artist Scott Patterson worked to replicate Molly’s tiny face on Mark’s shoulder.

Molly suffers from Tay-Sachs disease, for which there is no cure or treatment. Most children with Tay-Sachs disease live to the age of five with the best of care.

“She’s alive as long as I am,” Mark said as Patterson dipped the gun in a cup of ink. “I want to commemorate Molly and at the same time raise awareness about the disease.”

Molly Jordan was a bouncing baby girl, her mother, Bridget Jordan said. She began developing normally and even dug into her first birthday cake with both hands.

In the beginning, Bridget said Molly was a little slow, but she was born premature and the doctors were not worried.

It wasn’t until she was 16-months-old that she lost her head control and her parents became concerned.

“She’s missing an enzyme called Hexosaminidase-A, or, Hex-A,” Bridget said. “In normal people it fights lipid buildup, but because Molly doesn’t have it, it builds up on her brain and spinal cord.”

Molly is blind, Bridget said, and has almost no muscle control. Eventually Bridget said she will become deaf and completely paralyzed.

“This is the cruelest disease I have ever seen,” Bridget said. “A lot of kids learn to walk and tragically start to decline.”

For more than a year, Mark had talked about getting a tattoo of Molly. After being introduced to Scott, who specializes in portrait tattoos, Mark decided getting a tattoo with his daughter’s face would serve as a constant reminder of her while also reminding him to tell others about the disease.

“I want Molly’s life to have some meaning,” Mark said. “She’s only spoken three words, but this speaks louder than words.”

Mark said Molly has truly been a blessing in his and Bridget’s life, but he knows it will be hard to let her go.

“We don’t want anybody else to go through this,” Mark said.

Bridget said Tay-Sachs disease is not well known, and the family often has to refresh the memories of medical professionals trying to treat Molly.

There is a common misconception that the disease only affects people of European Jewish origin.

Though there is no treatment, Bridget said Tay-Sachs is preventable. A simple blood test can identify prospective parents as Tay-Sachs carriers.

Bridget said the gene can remain inactive in a family for decades and tragically reveal itself in an infected child.

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.

However, if a blood test identifies both parents as carriers, Bridget said the family can seek other options for bearing children, such as in vitro fertilization.

Bridget said she and Mark had no idea either of them carried the Tay-Sachs gene until a spinal tap revealed Molly was infected.

Patterson said Mark brought him several photos of Molly and they looked for a close up photo of her face with a lot of defining details.

After settling on a photo of Molly laying her head on a pillow, Mark decided to have the tattoo placed on his chest where Molly often rests her head to sleep.

“Tattooing is really a way a lot of people are choosing to memorialize someone,” Patterson said. “It seems to help give people closure, or in Mark’s case, a connection, to help them get through tough times.”

Bridget cuddled Molly in her arms and brushed the hair from her face.

“She’s our sunshine,” Bridget said. “She has taught me so much about life. Nothing with Molly gets taken for granted.

“Every smile or stretch, for a brief moment, she looks like a healthy little girl and we want to capture those moments forever. We thank God for every day we have with her.”

Patterson said it would take approximately three to four hours to complete the tattoo. Mark said after about 15 minutes, the pain of the needle began to subside.

“The tattoo’s not painful,” Mark said, “but watching your daughter die slowly is. She will be a part of me, not only in my heart, but the image will stay with me.

“When she’s gone, nobody can ever take that away from me.”