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 helpTo 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
The Manchester resident took a year off from work and tried to cram an entire childhood into less than two years.
"As a father, you never think about burying your son," Gaffney said, sitting beside his two children, both in wheelchairs, and his wife, Heidi.
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.
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.
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.)
The following year, Mrs. Gaffney was pregnant again. A test, conducted when HarleeGrace was five months in the womb, showed she had the gene.
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.
His Friday opponent, Andrew Tripp, knew nothing about Gaffney's personal life until a reporter asked how that might influence the fight.
Gaffney, a part-time bouncer at Drynk, a Manchester bar and restaurant, said his son joins him in the ring after a victory.
"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."
"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."
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.
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.
Paul attends Jewett Street School, accompanied full-time by a nurse in a self-contained special needs classroom, where the boy sees several therapists.
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.
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.
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