My son passed away from a rare disease called adrenoleukodystrophy (ALD) when he was 8. He was born healthy and had a normal life until halfway through kindergarten. The first sign something was wrong came when his teacher called us in to talk about how he was acting out in school. He wasn’t being mean, but he wasn’t following the usual rules either. He was doing things like peeing outside the urinal and acting out at strange times.
We took him to doctors, and they said he had mild autism and ADHD, even though he was very social, reading well, and had never shown signs of either before. We started therapy, but his behavior didn’t improve as we had hoped. It only got worse. He started forgetting things, talking less, and doing things that didn’t make sense for his age. The doctors thought it was our fault, that we weren’t doing enough with him. We tried harder, but nothing worked. He began asking if he was dying. We told him no, that everything would be fine.
After months of worrying and getting different opinions, we finally saw another doctor who suggested we test for something else. A genetic test revealed he had ALD. It was a devastating diagnosis. There was no cure, and the disease would slowly take away his abilities until he couldn’t do anything for himself.
For the next year, we watched him slowly lose his senses and the ability to do everyday things. He went through seizures and eventually became unresponsive. After he had a procedure at the hospital, he never walked again and couldn’t feed himself. His brain had stopped functioning, but his body was still alive. We were told he would die soon, and there was no way to bring him back.
The doctors were kind, but there was no hope. We had a team of palliative care doctors who helped guide us through the process. They knew he was going to die, and they tried to make him as comfortable as possible. As his body shut down, we had to make the hardest decision: to stop feeding him and giving him water, which would end his suffering. He passed away after three weeks without food or water.
ALD is a genetic disease that can be treated if caught early, through a simple test at birth. When my son was born, this test wasn’t part of the routine screenings in most states. Now, more states are testing for it, but it’s still not enough. If your son has the gene for ALD, one-third of them will develop the disease. Many others will have other serious health problems later in life.
This photo is of the last time I got Griffin to laugh. He was mostly non-verbal by then, and his senses were struggling, but there were still moments like this. Even though his body was healthy, he wasn’t aware of what was happening. The hardest part was the time we lost because of the misdiagnosis. Nothing can make up for that, but I’m grateful for the time we had and that we tried everything we could.