Mother and son share life-threatening disorder
By Kathy McCarty
Staff Writer
EASTON — Elijah Tarbox, 11, and his mother, Jessica Harding, of Easton, share a common bond — one that they’d gladly give up if a cure were available.
Staff photo/Kathy McCarty
A COMMON ILLNESS between Jessica Harding, at left, and her son, Elijah Tarbox, at center — both of Easton — require the pair to make frequent trips to Boston for treatment. The pair suffer from Adrenaleukodystrophy, a disorder that causes deterioration of the coating of nerves and can lead to serious disabilities as one gets older. To aid with trip expenses, they were recently presented with a Hero of the Month check for $100 by Maura DeLong, supervisor of The Cubby in Presque Isle, a thrift store headquartered in Caribou.
“Elijah was diagnosed two years ago with Adrenoleukodystrophy, or ALD. As a carrier of the disease I also am undergoing treatment in Boston. He’s been so brave — never complains about treatment,” said Jessica Harding.
According to the ALD Foundation, this is a neurological disorder that affects one in every 17,900 boys worldwide. The presentation of symptoms occurs between the ages of 4 and 10 and affects the brain demyelination — the stripping away of the fatty coating that keeps nerve pulses confined and maintains the integrity of nerve signals.
She said typically they make a trip to Boston about every three months — a task that became even more difficult earlier this winter, when fire destroyed their home.
“We lost our house to fire in February,” Harding said.
The family regularly travels to Massachusetts General, a medical teaching facility, where mother and son see specialists for their shared disorder.
“Ninety percent of boys with the disease suffer adrenal failure and have to undergo hours of testing,” said Elijah’s mother.
“The worst part about it is I don’t like having my blood drawn,” said Elijah Tarbox. “But I like the memory games.”
Harding said memory tests are performed to ensure the disorder is not affecting the brain.
“I haven’t had to miss much school and have been able to keep up with the work,” said Tarbox.
Harding credited her community for helping the family through difficult times.
“Coming from a small community and having a good school system — if anyone notices anything, they pick up on it. We’ve had a lot of community support,” she said.
Harding said losing her home was devastating but she’s thankful her family is safe.
“We were able to finding housing through a friend. At the time of the fire my 14-year-old daughter was home alone. Thankfully a passersby stopped to help — got her out in time,” said Harding.
Life hasn’t been easy for Tarbox’s siblings, said Harding.
“His sisters often get left behind. When we go for Elijah’s treatment, we try to do something special for the family. We try to align our appointments to consolidate trips and have family we can stay with sometimes, which helps cut costs,” she said.
Harding said for those unfamiliar with the disorder, there was a movie, “Lorenzo’s Story,” about a child and what his life was like, having to live with a disease that eats away at the coating of nerves.
She said she’s become a believer in miracles even more since the fire.
“Everything burned in the fire except items on a bottom shelf in the living room. Items surviving the blaze included our Bible, a baby book and two photo albums. We also had another box of keepsakes that made it out with little damage — Mother’s Day cards, report cards,” said Harding. “It’s just amazing of all the things that were destroyed, these precious few items survived.”
Harding said the outpouring of generosity since the fire has touched her and her families’ hearts.
“Andy Santerre invited us to the AMHC Sno-Run dinner, we were provided hotel rooms for a few days, others donated clothing, toys for the kids. Cindy Johnson, owner of The Cubby in Presque Isle, gave us a $25 certificate for clothing, that we used on dollar day,” said Harding. “The Cubby also recently presented us with a $100, which helped us with gas and trip expenses.”
Harding said expenses often exceed the family’s income.
“Trips can be taxing on our budget, especially since the fire,” she said.
She said she’s glad she had Elijah tested early.
“Family members suggested I have Elijah tested when my biological father, who had ADL, died last year. We rushed to get him tested and are glad he’s being treated at such a good hospital. By the time he’s an adult, doctors hope to have a cure,” said Harding, noting she also fears what will happen if no cure is found. “If they don’t find a cure, he could be severely disabled by adulthood.”
“We have a cousin who has it and is strapped in a wheelchair. It’s often mistaken for ALS or Lou Gehrig’s disease,” said Harding.
Tarbox said he’s not sure what he wants to be when he grows up but has some ideas.
“I like science, so maybe I’ll be a doctor,” Tarbox said.
Despite the reason for the trips, Harding said her family has had some wonderful experiences while in Boston.
“We’ve traveled the subway. Elijah loves to ride escalators. We’d like to see the Red Sox play at some point,” she said.
Harding said she’s been blessed with such a wonderful son.
“He never complains. When he was diagnosed, he asked “Mom, do I have the disease?’ I said ‘Yes, but it will be all right.’ He just said ‘OK,’” said Harding.
She said her family enjoys spending time together and even though they lost everything, she’s grateful they still have each other.
“My fiance and I have the kids — Elijah and his two sisters, ages 14 and 15. We have our dog and cat. The kids are finishing the school year in Easton while we try to determine if we’ll rebuild,” she said.
Tarbox said he was glad to be able to stay at the same school.
“My favorite subject’s math,” said Tarbox.
“He’s in Guys & Gifts, which shows boys different careers and they play math games,” said his mother.
With warmer weather here, Harding said the family will likely make a few trips to a favorite stop on the way for treatments.
“The family enjoys trips to the ocean. We try to do something fun each time — something that doesn’t cost much,” said Harding.
She wished to thank all who’ve helped her family — both with regard to the disease mother and son share and following the fire.
“People have been amazing. We’re really very fortunate,” said Harding.
Anyone interested in assisting the family can contact Harding by e-mailing jessicajsh@msn.com.
