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Osceola residents rally for statewide testing of ALD

Posted on Friday, April 11, 2014 at 10:00 am

By Tiffanie Reynolds
Staff Writer
After their son Gabriel passed away from Adrenoleukodystrophy (ALD) last summer, Dawn and Peter Grigsby, of St. Cloud, set out to prevent other families from losing their sons to the disorder.
Now, with the help of state Rep. Mike La Rosa, R-St. Cloud, they and three other Osceola County residents have brought the significance of ALD to Tallahassee. They are in the forefront of a potential statewide mandate for newborn boys to be tested for the disorder.
House Bill 1163, titled Newborn Adrenoleukodystrophy Screening, will add testing of ALD to the list of diseases newborn babies are screened for before leaving the hospital.
Written by La Rosa and co-introduced by nine other Florida district representatives, this bill, if passed, will make Florida the second state to mandate screening for ALD.
A second bill under the same title was introduced by La Rosa, HB 1165, is a memorial bill that urges the U.S. Department of Health and Human Services to add ALD as a disease to be screened for
newborns nationwide.
“Educating the medical community as well as the community in general with what’s going on is what we’re trying to do. Just to bring light to this disease. OK, yeah, the NFL is not wearing blue – the color for ALD – but these kids go through so much and they don’t have to. Because, if it is found early enough, it can be stopped,” said Peter Grigsby.
ALD is a genetic disorder carried in women but only affects boys. It attacks the Myelin Sheath, the protective coating around nerve cells in the brain, and breaks them down. If detected too late, there is no cure, and the disease degrades the boy’s motor skills until death. But ALD also can be detected months or years before symptoms appear, and, if detected early enough, can be cured by a bone marrow transplant. While only infecting 1 out of every 17,000 boys, it is this early testing that the Grigsbys and others around the state are pushing with the hope that less boys will have to endure the disorder.
La Rosa, who is a friend of the Grigsbys, began working on HB 1163 with them in February 2013, about a year after their son, Gabriel Grigsby, was diagnosed with ALD. While gaining a lot of support in the Florida House, the biggest challenge for this bill is finances.
Specifically, being able to purchase the equipment needed to conduct the screening for ALD in Florida. If equipment can be purchased in the state, the test will be nearly free to parents. But, if the tests need to be sent out of state, it will bump the cost to at least $7 for parents. Currently, the bill states that most major insurance companies will cover the test, but the bill still is in committee in
the House.
For the Grigsbys, these bills became their rally cry for their son. Diagnosed too late, a bone marrow transplant would only mean Gabriel living in a vegetative state or dying during
the transplant.
Instead, Dawn and Peter decided to let him live out his life as much as possible, giving him support along the way. Those years weren’t easy, and, while they accepted that Gabriel couldn’t be cured, they knew that they should try to save other parents from the hardship they went through.
“It’s almost as if somewhere in his soul he knew I only have a little bit of time here, and I’m going to enjoy every minute I have. I’m not going to worry, I’m not going to fret, I’m not going to get angry. And he did. He enjoyed his life, and lived every bit of his life,” said Peter Grigsby.
Kelly Strenges, of Palm Beach County, and who traveled with the Grigsbys to Tallahassee, is going through a similar struggle. Her son was diagnosed with a-symptomatic ALD in his teens, which is a form of ALD where the disease is detected but none of the
symptoms occur.
Since he was diagnosed, they travel as far as Minnesota for testing every year to keep the disorder in check. While nothing has flared up, living with that possibility is difficult on its own.
“For us not going through that, it’s like a dark cloud over our heads. It’s in the back of our minds, what if, what if, but we just try to go about our day, enjoy life and just stay on top of it, stay preventative, you know, keep informed and keep monitoring it,”
said Strenges.
HB 1163 mirrors Aidan’s Law in New York, mandating screenings of ALD in newborn boys across the state.  Since going into effect Dec. 30, 2013, the state already has detected four cases of ALD in the state.