Harvard rallies to help family
ALD fund-raiser set for tomorrow
He was a kid who always wore shades. During sunny days, cloudy days, even snowy days, little AJ put on his sunglasses and tooled around singing "Itsy Bitsy Spider."
AJ loved cars, and singing, and he liked sports, too, but he wasn't quite as coordinated as his older brother, Blake, who glided up and down the soccer field while his little brother ran after him.
The first time AJ fell, his mother chocked it up to clumsiness. But the next couple of times, when he literally tumbled over without provocation, she became concerned. Jaimie MacNeill took her son to the doctor.
Nobody could have prepared her for what happened next.
Her beautiful, happy, carefree 5-year-old was diagnosed with Adrenoleukodystrophy, or ALD, a neurological disorder that attacks nerve cells in the brain. It affects the patient's vision, coordination, and hearing, and often causes dementia and seizures. The onset of the disease usually presents itself in boys between the ages of 4 and 10. There is no cure, and over time these boys lapse into a vegetative state and die.
AJ was stricken with ALD in March 2006. When his grandmother, Barbara MacNeill, who has worked in the athletic office at Harvard for 15 years, learned of the diagnosis, it left her numb with shock. Life had been hard enough for AJ and his family. He was living with Jaimie, Blake, and his youngest brother, William, in a shelter for abused women. They were trying to piece their lives back together, but the news of AJ's illness shattered their world.
The news only got worse. Since ALD is hereditary, both of AJ's brothers were tested and both were discovered to have the gene that causes it. The fact they had not experienced any symptoms was critically important. They immediately began to be monitored by physicians at Mass. General and are tested every six months. Those who test positive for the gene have a 50 percent chance of developing the disease. Doctors have found limited success in treating symptoms with bone marrow transplants, but that, too, according to Barbara MacNeill, is a 50-50 proposition.
For AJ, there was nothing that could be done to save him. He was already in the midst of a rapid, terrifying decline.
Because her daughter was in a shelter and her whereabouts needed to be secret, it was near impossible for Barbara and her husband to visit and help her with AJ as he began to deteriorate.
"It was such a terrible time," AJ's grandmother said. "So hard to watch. AJ was very frustrated in the beginning. He was losing his ability to walk, but he didn't like lying on the couch. He was always trying to get on the floor and move around."
Barbara tried to keep her personal heartbreak separate from her work, but that was next to impossible. Michele McLaughlin of the Varsity Club learned of AJ's plight and vowed to do something to help the family. Harvard women's hockey coach, Katie King, and women's basketball coach, Kathy Delaney-Smith, joined McLaughlin in rallying around their friend. Barbara's sister, Beverly Sullivan, was an integral part of this core group.
"What was nice about these women," said McLaughlin, "was nobody wanted to say, 'Let me know what I can do.' They wanted to do something."
As news of AJ's illness spread, football coach Tim Murphy offered his support, too. Former athletic director Bill Cleary, upon hearing the family was in a shelter, quickly made some phone calls and found some housing for AJ, his mother, and his brothers in a special handicapped subsidized housing unit in Newton.
AJ was soon confined to a wheelchair. He lost his ability to walk, talk, and function. By June, he was gone.
He has left behind a devastated older brother who misses his best friend, and a baby brother who didn't have nearly enough time to hear AJ sing.
"It's been a long year," Jaimie said. "Blake has had a tough time. He has these tests every six months. I don't know how much he understands. I don't know how much I should explain. How much should an 8-year-old boy have to know?"
Blake helped his mother pick out AJ's tombstone. He thought it should have a rainbow, and a little spider to commemorate his brother's favorite song. In the first few months after his death, Jaimie would take Blake to the store, and they would buy a balloon, write a message to AJ, then let it go.
"But he doesn't feel like doing that much anymore," Jaimie said.
In the months since her son's death, Jaimie has gone back to school and found a new home for her family. Her life, she said, is back on course.
"We're OK now," she said. "All I want is for people to be aware of this disease."
The Harvard coaching community has joined forces to hold a fund-raising event, called "AJ's Wish," to benefit the ALD Foundation tomorrow night at Harvard's Hall of History in the Murr Center. It will feature an auction that includes, among other items, a signed Tom Brady football and vouchers for a week at various Crimson sports camps. (For more information on the event, which costs $25, go to ALDFoundation.org and click on AJ's Wish).
"We are in awe of what Harvard has done," said Jaimie MacNeill. "And if just one person finds out about ALD, then we've succeeded."
The little boy with the shades is gone, but not forgotten. The purpose of AJ's Wish is simple: to make sure no other family will be blindsided by a disease that, once in motion, cannot be contained. 