March 21, 2007
By CINDY WOJDYLA CAIN Staff Writer
CREST HILL — Aidan Walsh looks and acts like most other 6-year-old boys.
He’s smart, a little shy, plays T-ball and is enrolled in karate classes.
“He’s a blue belt, he’s very proud of his blue belt,” said his mother.
But a closer inspection reveals that the kindergartner is ill, seriously ill. He has gray patches of hair on his head and psoriasis on his skin. Those outward symptoms are only the tip of the iceberg. A much more serious battle is raging inside Aidan’s body.
Aidan was 10 months old before his parents, Shawn, and Amy Walsh of Crest Hill, knew something was wrong. Aidan fell over in his crib and didn’t cry or make a sound, Amy said. And he was so pale he was the color of mustard, she said.
That was the first of many, many trips to the doctor and hospital. In the past five or so years, Aidan has been diagnosed with seven different auto-immune disorders, which means his body’s immune system is attacking his own blood, nervous system and small intestine. All of his disorders together are known as a combined immune deficiency.
Through all the tests, blood infusions, hospitalizations and medications — which have included steroids, powerful antibiotics and immune system suppression drugs — Aidan, who attends St. Mary Nativity School, has been a trouper, Amy said.
The worst setback was when Aidan was 2½ and he developed Guillain-Barre syndrome, which made him have to learn to sit up and walk all over again.
Now Aidan and his family are headed toward the most difficult trip of their lives. Aidan needs a stem cell transplant to survive his many illnesses. He’s relatively healthy now, but through the years he has developed more and more symptoms and syndromes, Amy said. Doctors have said if he’s ever to have a chance at a normal life, now is the time. They fear he could develop a life-threatening infection or cancer if his illness is allowed to progress.
Hope for Aidan
The Walshes found out 14 months ago that his condition is genetic. Both Amy, 28, and Shawn, 30, have recessive genes that, when combined, led to Aidan’s illnesses.
“It’s like two needles in a haystack,” Amy said of the chances of them both having the recessive gene.
A second son, Nolan, 3, received only one recessive gene so he didn’t get sick. Amy assumed she wouldn’t have any more children because of the genetic issue. One week later, she found out it was too late, she was already pregnant.
But that pregnancy has turned out to be the best hope Aidan has for a normal life. Liam, 5 months, is healthy, and he is a perfect bone marrow match for Aidan.
“He’s our little gift from God,” Amy said.
Liam’s umbilical cord blood was saved when he was born. That blood will be used to give Aidan a new immune system.
“It was God’s way of telling me, this is what he needs us to do,” Amy said of Liam’s birth.
In April, the family will head toward a hospital in Cincinnati, Ohio, that specializes in bone marrow transplants for children with auto-immune disorders. For 10 days, Aidan will withstand a series of chemotherapy treatments that will completely wipe out his faulty immune system.
Then, Liam’s umbilical cord blood will be injected into one of Aidan’s arteries through a central line implanted in the boy’s chest.
“After that we wait for it to engraft and grow and make new cells,” Amy said. “That’s when we pray that it works.”
Amy said Aidan could be hospitalized for about 100 days. But he will have to stay near the hospital for as long as a year. Amy is hoping he can come home three months after he’s released from the hospital, but so many factors are involved in how long it will take him to recover, the homecoming date is impossible to predict.
The boy knows of his upcoming procedure.
“He’s scared,” Amy said. “He’s got lots of questions. He also knows it will make him better.”
The stem cell transplant is risky. The chemotherapy treatment will make Aidan weak and vulnerable to infections. But it’s the only hope the boy has of living a normal life, or perhaps living at all, Amy said.
Through it all, Amy said her husband, who is an academic adviser at Washington Jr. High School, has kept her strong. He is funny and he makes her laugh, which has helped them both get through the darkest days.
“Without him, I don’t think I would have survived,” Amy said. “He keeps the laughter going in our house.”
Aid for Aidan
The couple’s families have rallied around Aidan. Aidan’s grandparents are County Executive Larry Walsh and his wife, Irene, and Keith and Kathy Courtright, all of Elwood.
Family members have planned a benefit from 2 to 6 p.m. Sunday at St. Mary Nativity School Gym, 706 N. Broadway, Joliet. Tickets cost $15 and can be purchased at the door. There will be raffles, food and a silent auction.
Donations also can be sent to the Aidan Walsh Benefit Fund, c/o Bank of Manhattan, P.O. Box 85, Manhattan, IL, 60442-0085. For more information go to the aid4aidan.org Web site.
Amy said she is so appreciative of all who have helped the family. Businesses have donated items for the raffle. Others are providing food. She said her mom’s beauty shop is having a cut-a-thon.
Insurance pays for most of Aidan’s medical care. But the apartment and living expenses in Cincinnati are not covered. That’s where the benefit and donations will help.
Though she never says, “Why me,” Amy said she sometimes wonders “Why Aidan?” But those kinds of thoughts don’t linger long. Instead, Amy and Shawn are focused on the future — Aidan’s future.
“Twenty years down the road, I hope Aidan will look back and say this made me a better person,” Amy said.
Reporter Cindy Wojdyla Cain may be reached at (815) 729-6044 or at email@example.com