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January 30. 2014 9:13PM

For the Gaffneys, life's biggest battle isn't in the MMA ring


MMA fighter Paul Gaffney III asks his son, Paul IV, 6, a question, and Paul blinks his answer, with his wife Heidi and HarleeGrace, 4, in the background at Tokyo Joe's Studios in Hooksett on Tuesday. Paul Gaffney is preparing for a bout Friday night while he and his wife care for their two young children, both stricken with a degenerative brain disorder known as Canavan disease. (Thomas Roy/Union Leader)

MMA fighter Paul Gaffney III throws some punches at Nick Alley, at Tokyo Joe's Studios in Hooksett on Tuesday. (Thomas Roy/Union Leader)

How to help

To help the Gaffneys attend a conference about Canavan in April and raise money for the disease, people can donate at: www.youcaring.com/other/help-the-gaffney-family-get-to-the-ntsad-confrence/110049

HOOKSETT-- Years before Paul Gaffney became a rising martial arts fighter in New England, he was told his first-born son wouldn't live to celebrate his second birthday.

The Manchester resident took a year off from work and tried to cram an entire childhood into less than two years.

Now 6, Gaffney's son, Paul IV, lives on two feeding tubes, and history suggests he won't make it to adulthood.

"As a father, you never think about burying your son," Gaffney said, sitting beside his two children, both in wheelchairs, and his wife, Heidi.

About 16 months after Paul IV was diagnosed in 2007 with a fatal neurological disease with no cure, doctors confirmed his sister, HarleeGrace, also carried the fatal gene.

The Gaffneys won't need to save for their kids' college years like other parents, but they refuse to plan their children's funerals "just because statistically the doctors say that they're not going to live very long," Gaffney said at Team Link Hooksett Brazilian Jiu-Jitsu and Mixed Martial Arts, where he trains.

"We may be wrong, but we'll never plan for (funerals) because we feel it's a sign of giving up," Gaffney said a few days before his big martial arts fight tonight at Rockingham Park.

Devastating news

The Gaffneys' first child was born by Cesarean section eight days late in August 2007. Seemingly a healthy kid, Paul IV learned to roll over in his crib early. But his parents noticed the boy was crying more than a baby should. Then at around five weeks, he started throwing up and, with his eyes shifting from side to side, was brought to a Massachusetts hospital.

Eleven days later, little Paul was diagnosed with Canavan disease, a neurological disorder in which the brain degenerates into a spongy tissue, according to the National Institute of Neurological Disorders and Stroke. "Death usually occurs before age 10, although some children may survive into their teens and twenties," the government website said.

"We were devastated," said Mrs. Gaffney.

Both parents must carry the gene, most commonly found in Ashkenazi Jews, which neither parent is. And then the chance of a child getting the disorder is 1 in 4.

The Gaffneys, who live on Manchester's West Side, learned an expectant mother had a 1 in 1.2 million chance of delivering a child with Canavan. (A person is twice as likely to win an Olympic medal, according to one website.)

"My kid's diagnosed with this," Gaffney said, "but we can't even hit the lottery."

The following year, Mrs. Gaffney was pregnant again. A test, conducted when HarleeGrace was five months in the womb, showed she had the gene.

"We had to make a decision (on whether) to terminate the pregnancy and focus on Paul," Mrs. Gaffney said.

They kept her.

For the children

After his daughter's birth, Paul Gaffney got involved in martial arts to get into better shape but didn't enter his first fight until last summer. After winning his first three amateur fights in his 170-pound weight class, Gaffney, who last November was laid off from his heating and air conditioning job, plans to defend his top amateur ranking at tonight's Winter Brawl mixed martial arts event at Rockingham Park in Salem.

"Everything Paul does is for his kids," said his trainer, Ed Carr, who owns the Hooksett studios. "He's driving to do whatever he can for his kids."

His Friday opponent, Andrew Tripp, knew nothing about Gaffney's personal life until a reporter asked how that might influence the fight.

"It won't affect me," the Maine fighter said in a telephone interview. "I can understand how it would motivate him and want to make his kids proud while he can."

Gaffney, a part-time bouncer at Drynk, a Manchester bar and restaurant, said his son joins him in the ring after a victory.

"If my son couldn't be at the ring, I'd probably turn down the fight. I wouldn't even fight if he couldn't be there with me," Gaffney said, tearing up. "I think for the most part every father looks at their child and they want to throw that football to them. They want to play catch. They want to do all that stuff. Unfortunately, I don't have that liberty, but the one liberty that I do have is to get into that cage and fight."

During his high school football days in Malden, Mass., Gaffney sustained a few concussions and broke his neck twice. And he added a few more concussions and cracked ribs while martial arts fighting.

"I love my kids more than anything in this world," he said. "And I think if a doctor ever told me that your life expectancy or your life is more valuable than you career or your fighting, I would stop in a heartbeat, but so far the doctor says I'm still healthy to fight, so I'll continue to keep on fighting."

Gaffney, who trains about six hours a day seven days a week, said he doesn't want foes to feel sorry for him.

"Regardless of my family issues, I would never ever want anybody to hold back from anything because if I took something that I didn't deserve, I don't want it," Gaffney said. "I want something... because I deserve to have it."

Treated 'like a normal kid'

Neither child can speak or walk.

"They're like total opposites," said Mrs. Gaffney, a stay-at-home mom.

At age 4, Paul was able to answer yes or no by blinking his eyes a certain way, something his sister hasn't picked up yet.

"She moves her hands more than Paul does," mom said.

Both of their faces lit up when their dad bounced a ball on a mat at Team Link Hooksett.

HarleeGrace communicates using an iPad at Parker-Varney School in Manchester. She can choose between two items that make a noise — say, a light-up toy vs. a cow.

"She will reach and she'll touch which one she wants," her mom said.

Paul attends Jewett Street School, accompanied full-time by a nurse in a self-contained special needs classroom, where the boy sees several therapists.

The children's health care bills are paid by Medicaid, including about $3,000 in monthly prescriptions. The children also receive Social Security to help cover expenses.

Their parents say in some ways their lives are easier than parents with children without disabilities, knowing, for example, their kids won't mingle with trouble-making peers.

"We don't let the disease get to us," Mrs. Gaffney said. "We treat them like a normal kid."

Like putting Paul on a snowmobile for a ride.

Both parents sport a tattoo on their left leg with their kids' names and the phrase "I Love My Tubie's." A border of a heart is made to look like a feeding tube, which both children use.

"We pray to God more than I would say most people," the fighter said. "Every day, we thank God just for waking up and giving our kids the breath and give them that power, that will to open up their eyes. They are like so strong and they don't even have to be. That's the most amazing part about them."

To help the Gaffneys attend a conference about Canavan in April and raise money for the disease, people can donate at: www.youcaring.com/other/help-the-gaffney-family-get-to-the-ntsad-confrence/110049

mcousineau@unionleader.com


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