SOUTHFIELD — Disney’s new heroine, Merida, is fierce in “Brave,” but it was a few local children who were honored for their display of courage last week.
Merida made her skating debut for Disney On Ice’s Rockin’ Ever After at The Palace of Auburn Hills after the wild success of the film and books. Five children participating in the Make-A-Wish Foundation of Michigan were right alongside of her for a pre-party the day the show kicked off Oct. 4.
Southfield’s 6-year-old Ladarries Martin, who suffers from a rare terminal illness, was one of those very “Brave” children.
“He had so much fun. Everyone thought he had skated before,” DeWonda Smith, Martin’s mother, said. “Even Merida was like, ‘Wow, he’s never skated before?’ because he was out there skating and twisting and having fun. He’s such a trouper.”
It might not have looked like it, but it was indeed Martin’s first time ever on an ice rink. The Bradford Academy first-grader has a serious illness that he and his family battle each day.
Adrenoleukodystrophy, known as ALD, is a genetic neurological disorder that affects the male brain with demyelination, or the stripping away of the fatty coating that keeps nerve pulses confined and maintains the integrity of nerve signals.
Essentially, Martin’s adrenal glands do not function, and he is unable to break down fat in his body. Smith explained that the women of her family are carriers, though the disease affects only boys. The disease affects one out of every 17,900 boys.
“He was diagnosed with it while I was pregnant with him,” she explained, adding that Martin now takes two pills each day and is given Lorenzo’s oil, a combination of oils that reduce long-chain fatty acids in the blood, and a very low-fat diet. “He has it, though the activity hasn’t showed up in his brain.”
ALD’s onset can appear in various stages of life, including as a child, adolescent or adult, with symptoms that first appear as neurological deficits, like poor attention span, and then lead to deterioration of sight, hearing, memory and the ability to swallow as nerve cells throughout the brain are destroyed.
Childhood onset is the most severe.
“At the age of 8, that’s when you start panicking and wondering. We don’t know yet what will happen, we just have to do the MRI every year,” Smith said, adding that they head to Baltimore for the annual MRI and see a local genetics doctor every three months to monitor brain activity.
According to the ALD Foundation, once abnormal brain activity is detected, ALD symptoms progress and can debilitate patients within just a few years. There is no complete cure for the illness, though treatments, like bone marrow transplants, help slow down how the disease destroys the body.
Smith has lost two brothers, one of whom just died in February, she explained. At the age of 36, the brother was the oldest living member of the family with ALD.
“I asked Ladarries, ‘Do you know why?’” Smith said, explaining that while they work hard to maintain the kind of life a typical 6-year-old should have, there are extra precautions. For instance if he gets sick with a seasonal cold or flu, he has to go to the hospital. If he is too active, he passes out and is at risk to have a seizure. On cold days he is unable to go out for recess with his classmates. For meals, he is limited to 16 grams of fat each day.
“He knows he just lost an uncle. He was very close to him and still talks about how much he loves him,” Smith said. “He saw that he was fed through a feeding tube, that he was sick. He doesn’t understand that’s what could happen to him, though.”
In the meantime, while Martin is a seemingly healthy young boy, Smith said they take it one day at a time and make the most of what he is able to do. Their journey with Make-A-Wish has really helped with that, she added.
“I recommend that every parent (who) has a child with any kind of disability go through Make-A-Wish. You don’t meet a lot of people who understand until you’re in this type of situation. It’s encouraging. They are like a family,” she said.
For Martin, opportunities like Make-A-Wish mean more friends and cool memories, like playing a “kid-friendly” game of archery with a real-life Disney princess.
“I really enjoyed myself with Merida,” he said after the event, adding that he was a fan of the movie “Brave” and wasn’t nervous at all that day. “I would like to go ice skating again.”
Laura Varon Brown, director of communications and public relations for Make-A-Wish Michigan, said the organization hosts events like this to make kids feel special.
She said that in Martin’s case, that was particularly important, in order to cheer him up after a rough week.
“Ladarries had come from the doctor and it was an uncomfortable visit, so it was a nice treat for him,” Brown explained via email. “(The party) was small and intimate, and the kids were able to skate with Merida, which is pretty special for a child.”
Smith said people ask all the time about having a child with a genetic disease. For her, it’s about living life to the fullest, for her and her son.
“When you live through it, you learn to deal with having a child that has (a terminal illness). You just keep a positive outlook on it,” she said. “I do my part and I keep it in God’s hands.”
Smith said she will always be honest with Martin about his disease and his future. The resilience he shows also gives her hope, she added.
“He doesn’t let it bring him down. He’s outgoing and full of life. He’s a joy and he makes my every day. He picks me up if I’m depressed, he’s my baby,” she said. “I tell people, don’t let an illness stop you from having kids. I know my life would be nothing without him.”
Children from West Bloomfield, Taylor and Canton also participated in the Archery & Ice Skating Party With Merida through Make-A-Wish Michigan.
The Make-A-Wish Michigan chapter was established in 1984 and has granted the wishes of more than 7,000 kids. For more information on the program, visit www.wishmich.org.