By Ann McGough

Adrenoleukodystrophy (ALD) is a rare genetic disorder characterized by the breakdown or loss of the myelin sheath surrounding nerve cells in the brain and progressive dysfunction of the adrenal gland.

Though this awful disease is very rare, one local family lost a little boy to it. Stephen Owen Kenny was diagnosed with Adrenoleukodystrophy on his seventh birthday. He died in February of 2001.

Such a horrific loss would leave many bitter and angry at the world. But Stephen Kenny's mother Carole Trainor and his grandparents Owen and Carole Trainor have been working diligently to make the world, and Neponset in particular, a better place.

Owen Trainor, an architect by trade, recently designed and constructed a Thomas the Tank themed play area for the young students of Saint Ann School, where young Stephen was a student and his brother David now attends.

"This was really a labor of love," Trainor explains. "It took a year to build and it was my way of working through the grief after Stephen died. It was our gift to Stephen's classmates. Stephen loved older children and he loved playgrounds. We hope to keep adding on to it."

Mr. Trainor says that once the project was complete, the students' fathers helped by laying down wood chips, and transporting the railroad piece by piece from Trainor's Oakton Avenue driveway to Saint Ann's schoolyard. Thomas the Tank was one of Stephen's favorite characters.

"He had the whole set. All of the kids seem to love Thomas. I was in Abington and I saw a smaller version of the train set. It cost $2,000. I was going to buy it for the school. But the more I looked at it, I saw that it would probally not hold up too well. So, I decided to build one myself. About 125 kids play on that set five days per week."

Mr. Trainor says that he frequently "visits" the train at night, to make sure everything is working okay. "One night, I saw the nuns on it!"

In addition to the beautiful train, Owen, and his daughter Carole, Stephen's mother, have designed a Crèche, which he is currently constructing outside of Saint Ann's Church. "We are trying to make to make the Crèche as authentic to the times of Jesus as possible. There are three palm trees, a Star of David, and two date trees. The stable is 8' by 8'. Anthony Jameson, a friend from work, has been helping with the heavy construction on Saturdays. We would have had it done a lot sooner if the weather cooperated more."

Trainor says that he and his family are trying to show their gratitude to the Saint Ann Parish community for the overwhelming support that they received during Stpehen's illness and death.

"If someone had told me ten years ago that I would be living in a two-family house in Dorchester, and loving it, I would have said they were crazy," shares the South Boston native and 30-year Quincy resident. "Here, I am surrounded by friends. When Stephen was sick, I could not believe the outpouring of support the parish community. I cannot say enough about the people in Dorchester. The people who do not live here don't know what they are missing."

Mr. Trainor shares that Stephen's first-grade teacher, Maureen McKinnon, approached him about a fundraiser. "She told me that the teachers really wanted to do something to help defray the cost of the medical bills. Carole was taking Stephen out to Minneapolis for treatment. I was naïve. I thought they would be gone for a week and that would be it. I naive thought they would be going back and forth for four months. The support was tremendous."

"Father Wally (Keymont, Saint Ann's Pastor) has told me that it was amazing how Stephen's illness brought people together. Everyone pulled together. People who had never gotten along, worked together. Maybe that was Stephen's purpose, to bring people together. People made a lot of sacrifices for us and we just want to say thank you."

There are several forms of ALD. Onset of the classic childhood form, which is the most sever, and affects only boys, may occur between the ages of 4 and 10. Features of this form may include visual loss, learning disabilities, seizures, dysarthria (poorly articulated speech), dysphagia (difficulty swallowing), deafness, disturbances of gait or coordination, fatigue, intermittent vomiting, meloderma (increased skin pigmentation), and progressive dementia. The most common symptoms are usually behavioral changes as abnormal withdrawal or aggression, poor memory, and poor school performance.

The prognosis for patients with ALD is generally poor except after successful bone marrow transplant. Death may occur with 1-10 years after the onset of the disease due to disease progression.

Arthur Creator Made Special Visit to St. Ann's
Little Stephen Kenny loved Arthur, the diligent little aardvark on PBS. Throughout Stephen's treatments, he caressed his Arthur doll. When Stephen was buried, one of his classmates put an Arthur doll on his grave. Stephen's family placed a glass dome over Arthur so he could stay with Stephen.

When Stephen's grandmother, Carole Trainor read that Arthur's creator, Marc Brown was going to be signing books at the South Shore Plaza, she headed down to Braintree to have some of Stephen's book autographed.

When it was her turn to meet Brown, Mrs. Trainor told him the story of Stephen's illness and death. Both Trainor and Brown ended up in tears as they discussed the little boy's courage.

Marc Brown, who very rarely makes public appearances these days, visited Stephen's friends at Saint Ann School recently. He gave the children a demonstration and donated some of his autographed artwork, which will soon be prominently displayed in the halls of the school.

-Ann McGough