For the Gaffneys, life's biggest battle isn't in the MMA ring
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.
To improve the chance of seeing your comment posted here or published in the New Hampshire Union Leader:
- Identify yourself. Accounts using fake or incomplete names are suspended regardless of the quality of posts.
- Say something new, stay on topic, keep it short.
- Links to outside URLs are discouraged, if used they should be on topic.
- Avoid comments in bad taste, write well, avoid using all capital letters
- Don't cite facts about individuals or businesses without providing a means to verify the claim
- If you see an objectionable comment please click the "Report Abuse" button and be sure to tell us why.
Note: Comments are the opinion of the respective poster and not of the publisher.Be the first to comment.