Community rallies to help toddler with rare brain disorder
July 18, 2009 · Updated 12:21 PM
Aaron Maher is a determined little fellow, despite the rotten hand he’s been dealt.
He’s smart, talkative in his own way, and funny. He likes to climb on the furniture.
He’s been learning to walk for a month, and is progressing nicely despite his problems with coordination. Turn your head for a moment, and he’s wobbling toward the playground slide.
“Everyone who sees him thinks that he’s perfect,” said his mother, Rebecca Maher. “But he’s been dealing with illness his whole life.”
And his troubles are far from over. Next week, at Seattle Children’s Hospital, a neurosurgical team will take out a hunk of his brain.
“It’s a very rare and risky surgery,” Maher said. “They don’t usually do it for infants. When he gets through it, we already know he’ll be different.”
Aaron, who’s 13 months old, was recently diagnosed with Chiari malformation, a rare brain disorder in which the cerebellum, the back part of the brain, outgrows the skull and expands into the spine.
Symptoms Aaron has experienced, and has had difficulty communicating, include headache, difficulty swallowing, pain and weakness, hoarseness, numbness, pins and needles, visual disturbances, balance problems and at times, loss of consciousness.
Two months ago, Aaron began banging his head with his hands and against the wall, scratching at his head and face, and vomiting.
“It just goes on and on,” Maher said.
“But he’s such a happy boy, even with all that. He’s the sweetest, cutest thing. We love him to bits.”
The only treatment for Aaron’s condition is brain surgery. A six-hour procedure at Children’s is scheduled for Tuesday, July 21.
“It’s been hard for us as a family,” his mother said. “And there’s a whole bunch more to come.”
Maher, 27, and her husband Jason, 30, live in Freeland with Aaron and their other two children, Julia, 5 and Ian, 4. Jason Maher is employed in the produce department of PayLess Foods in Freeland.
Both Mahers are Californians who moved to the island about five years ago. Rebecca Maher’s mother, Carolyn Woods, lives in Greenbank, and there are other relatives on Whidbey.
The surgery is but the latest chapter in Aaron’s young life, which has kept him going to a doctor or a hospital every week since he was born.
His first year was a struggle to survive after being diagnosed with tracheomalacia, a weakness of the walls of the trachea. It disrupted his sleep and caused him to aspirate food and drink.
When Aaron comes home from the hospital after the surgery, he’ll require months of round-the-clock care, and in the beginning will need to be held almost constantly.
The family has medical insurance, but the mounting cost of travel, lodging, food and childcare for a family of five, thanks to Aaron’s weekly medical routine, plus the anticipated expenses associated with his long recovery and possible follow-up surgery, are weighing heavily on the nerves, and on the budget.
“Those things have been costing an extra $1,000 a month,” Rebecca Maher said. “We were tight before, but now there’s no way.”
Some are trying to find a way, however. Local civic activist and entertainer Beverly Graham is helping to spearhead a community effort to help the Mahers. Fundraisers have been held, and others are planned.
“The South Whidbey community is known for reaching out to our neighbors in need, and the Mahers need us,” Graham said. “Baby Aaron needs us.”
A “Baby Aaron Brain Surgery Fund” has been established at Whidbey Island Bank branches, Graham said.
Members of the Unity Church of South Whidbey are coordinating fundraising efforts and are scheduling contributions such as house cleaning, babysitting and meal preparation.
A car-wash fundraiser will be Saturday, July 25 at Ken’s Korner shopping center in Clinton, sponsored by the staff of Rumors Hair Salon. A bake sale at Island Athletic Club in Freeland, where Aaron’s grandmother teaches swimming, already has raised money for the family.
Rebecca Maher said the stresses involved in Aaron’s ordeal have affected family members differently. Her husband tends to keep things inside, she said.
Daughter Julia “is having a hard time. She cries about it at night.”
“Ian tries to act oblivious, but he knows something’s going on,” she said.
As for herself, she said she keeps putting one foot in front of the other, and stays positive about the surgery and the ordeal to come.
“It’s risky if we don’t do it, it’s risky if we do,” she said. “They think that now’s the best time. We’re just praying and hoping he comes through it.”
For information on how to help, call Graham at 341-1852 or Joyce Small at 579-2617.