RUTLAND — A few weeks ago, eight-year-old Evan Hayman, of Rutland, was enjoying Christmas with his parents, Lindsey and Robert Hayman.
Less than a month later, a specialist at Nationwide Children’s Hospital in Columbus diagnosed him with adrenoleukodystrophy, or ALD.
ALD is a rare genetic disorder that affects one in 8,000 people, most of whom are young boys or men. According to stopald.org, this disorder destroys myelin, or the protective sheath that surrounds the brain’s neurons, or the nerve cells that allow humans to control muscles, including the brain. This is caused by a defect in the long chain fatty acids, as discussed in the film “Lorenzo’s Oil,” about a father who discovers an oil, of sorts, that can break up the long fatty acid chains.
The younger the age of the individual who has ALD, the more debilitating the disease, and Lorenzo’s oil has a better chance of working before the symptoms, like Evan’s, show, his grandmother Kathy White said. Currently, Evan is terminal.
However, White and other family members are hoping that a total bone marrow transplant will be able to potentially save Evan’s life.
Robert, Lindsey and Evan are currently in Minneapolis, Minn., where the lead research on ALD is being conducted in clinical trials. After this week’s tests, the family will know, through blood testing specifically, whether or not Evan is well enough to receive a bone marrow transplant. His father is the first candidate for testing, and if that doesn’t work out he will be put on a donor list. There may also be a chance to receive an umbilical cord transplantation, which is also in the clinical trial phase.
“A bone marrow transplant is risky, and it takes a few months before the new bone marrow can kick in, so his brain will still be degenerating,” White said. “And even when the marrow will start building up then stop the degeneration of his brain, it can be six to 12 months of degeneration before that (kicks in). (The disease) is very quick moving. He could be running around today and unable to walk next week.”
One of the early symptoms of ALD can be a sudden change in behavior. In Evan’s case, the little boy with good grades who paid attention in class was suddenly unable to sit still or concentrate. Two sets of counselors, one from Meigs Primary and another from Woodland Centers, eventually told Robert and Lindsey right before Christmas that they wondered if the issue was something physical, and if Evan should be tested. On Jan. 8, Evan was given an MRI at Holzer Health System in Gallipolis, with doctors believing what they saw on the scans to be a tumor.
Needing another opinion, the family went to Nationwide Children’s Hospital for another look on Jan. 12, where they were told Evan did not have a tumor, but that he needed to see a neurologist regarding his condition, whatever it was. Finally, blood work was returned on Jan. 19, and the diagnosis of ALD was confirmed.
“I wouldn’t want people to be afraid … to dwell and think, ‘My child has this.’ But I think that there needs to be an awareness that this is a possibility,” White said. “We were blindsided by this.”
But no matter what the future holds for Evan, White and Evan’s other family members are holding out hope and providing opportunities for the community to help Evan and his family with whatever expenses may lie ahead.
Their gofundme web page is gofundme.com/m6q4bysc, although gofundme does charge a fee, so money may also be donated to a nonprofit account at Peoples Bank. Checks may also be sent to White, who is helping with expenses as well, at 34065 New Lima Rd. Rutland, Ohio 45775. Checks should be made out to Evan Hayman Benefit Fund.
For updates, check the family’s Facebook page Evan’s Allies.