You wouldn’t know by looking at 5-year-old Grayson Ledbetter that he only had a few years of life left to live. According to The Washington Post, Grayson battles the rare, aggressive Alexander disease. Despite living a life with constant probing, testing, and doctor visits, he remains a bright, positive light in the Ledbetter family.
Alexander disease is an extremely rare disease with only 500 recorded cases since 1949. The disease is a form of leukodystrophy, which attacks the white matter that protects brain nerve fibers. Patients diagnosed with the disease start facing physical and mental developmental delays and regression. Most children don’t live past the age of 10.
Grayson wasn’t progressing in pace with his peers. He struggled to learn to walk, speak, and even eat. When he turned 4-years-old, the symptoms ramped up and he faced his first seizure which sent him to the hospital. After being bounced around from multiple doctors and specialists, they finally received Grayson’s diagnosis at the Leukodystrophy Center at the Children’s Hospital of Philadelphia (CHOP). The white matter deterioration had already begun and was spotted in his MRI.
This was the first time parents Josh and Laura had even heard of the disease before. Their world was shaken and they felt hopeless, yet they still somehow found strength to rise to the occasion. They put Grayson in an Alexander disease study, started a nonprofit for research and learned to embrace every moment they have with Grayson. They are so proud of their son who continues to bring joy to their lives and everyone else around despite all that he has to go through day in and day out.
There are several studies underway with hope of finding a treatment or cure for the disease. Amy Waldman, pediatric neurologist from CHOP, has been studying the direct effects of the disease on patients, and other research by Albee Messing continues at the University of Wisconsin, Madison.
While no answers have been found so far, there is hope in knowing that multiple people are fighting for Alexander disease patients every day.