Hayden's Hope: Benefit for boy battling genetic disease is Saturday
Disease featured in film 'Lorenzo's Oil'
DEXTER, Mich. – Hayden Watkins is just 8 years old, and he's about to face the fight of his life.
"We are in a race against time," said Hayden's mother, Kim Watkins. "He could wake up deaf, he could wake up blind, he could wake up not able to move one day."
Hayden is suffering from from a disease most people have never heard of, unless you happen to remember it from the movie "Lorenzo's Oil."
Now, Hayden's family is hoping for a happy ending worthy of Hollywood.
The disease is called adrenoleukodystrophy (ALD). In the early stages, it can be misdiagnosed as ADHD, Asperger's syndrome or a vision problem. Unlike many boys diagnosed with this disease, Hayden's parents knew he was at risk because his maternal grandfather and great uncle suffer from the adult form of the disease. But that didn't make it any easier when the call they had always feared actually came.
"I sat in my car and cried for three hours," said Kim Watkins.
On the other end of the phone was a doctor telling Watkins her son had a lesion on his brain -- a lesion that untreated would destroy his brain in the next two years.
"These children break down to a vegetative state within two to four years leading to death," said Kim Watkins.
Hayden was diagnosed with adrenoleukodystrophy when he was just 5 days old.
But he hadn't shown any symptoms until he started having behavior and memory problems earlier this year.
An MRI showed the lesion had formed.
Hayden is a typical 8-year-old who loves to ride his bike, draw and hang out with his family. He recently convinced his parents to let him have his blonde hair cut into a Mohawk.
"It's probably one of the hardest things, to explain it to him in terms he understands," said Kim Watkins.
It's not easy to explain to adults either. Adrenoleukodystrophy is caused by a genetic defect on the X chromosome. It causes the body to be unable to break down very long-chain fatty acids causing them to build up in the brain, nervous system and adrenal gland. That leads to progressive brain damage.
Adrenoleukodystrophy occurs in about 1 in 20,000 males. Females can carry the disease, but rarely suffer the severe effects. The milder form affects adult men, but in boys, adrenoleukodystrophy is fatal without early treatment.
Adrenoleukodystrophy was the disease featured in the 1992 film "Lorenzo's Oil" about a father fighting to develop a cure to save his son. The treatment Lorenzo's dad developed is called "Lorenzo's Oil." It has helped prevent the onset of the disease in some boys, but it is not a cure.
Hayden's only hope is a bone marrow transplant. It will be performed at the University of Minnesota in September. He'll need to stay there for five to seven months to recover afterwards.
"Our biggest hope is that he comes home with us and we watch him drive his first car and get married," said Watkins. "We know what the risks are. We know that we may come home alone, that's a possibility, we know that. But we have faith that that's not going to happen. He's going to be fine."
Adrenoleukodystrophy can be detected in newborns with a test that costs $1.75, but only two states -- New York and Connecticut-- have passed legislation requiring babies to be tested for ALD as part of their newborn screening. Families who have lost children to adrenoleukodystrophy are fighting to change that across the country.
"Every state needs to mandate that every boy born is tested for this because when you know early, you can save their life," said Kim Watkins. "We are so blessed that we know so early. Most families don't."
News of Hayden's fight has spread through the Dexter community, with people stepping forward to help in any way they can. A benefit to help with medical and travel costs has been organized in Hayden's honor.
"The community has just rallied around us," said Kim Watkins. "We can't thank everybody enough for coming together and making it possible that we can both be there for him during this process while he's in Minnesota."
The "Hayden's Day Benefit" is Saturday, Aug. 23 at the Local #190 and IBEW #252 Union Hall at 7920 Jackson Road in Ann Arbor.
It runs from 4 p.m. to midnight and will feature a pulled pork dinner, bands and a DJ, 50/50 raffles and basket raffles.
The children's activities run from 4 p.m. to 7 p.m.
There will be a live auction at 7pm.
Contributions to Hayden's fund can be made at on his GoFundMe.com page, or at the Fifth Third Bank at 2090 W. Stadium Blvd., Ann Arbor, MI 48104. Checks should be made payable to the "The Benefit of Hayden Watkins."
To learn more about adrenoleukodystrophy, click here.
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