Little did the Buchanan family know, that in 2008 when their beautiful daughter was born, that a chain of events would lead to a wheelchair, its cross country journey, and all the people who would come together to make it happen.
You see, Ruby Elizabeth (Beth) Buchanan was born with an incredibly rare mitochondrial disorder called Pearson’s. Beth lost her battle with the illness at barely 4 years old. In honor of her memory, her family started a foundation in her name. As with many mito disorders, Pearson’s manifests differently for each child but some of the basic symptoms usually include bone marrow failure early on, muscle weakness, renal issues; as well as endocrine, cardio, and neurological. In a nutshell, Pearson’s affects everything, eventually. This foundation not only brings awareness but also helps transport the specialized adaptive chairs to a new family, as a need arises. The first chair was Beth’s and it went to a child in California.
Eli (who also had Pearson’s) may be considered a bit of a celebrity. He has even been featured in Sports Illustrated and has a law named for him in his hometown of Huntington County, NY. Eli was able to celebrate his 15th birthday shortly before passing last year. When Ellen, Eli’s mother, offered his chair to another child, in Louisiana- the foundation immediately offered to facilitate the transport.
And here’s where it got fun- the goal was to not have either family to have to foot the bill for this transport from New York to Louisiana. By a stroke of luck- an old family friend had been making frequent trips from NY to MD – and she was happy to pitch in when she learned of the mission. From there- Martin Zepeda with Stewart Moving & Storage generously volunteered space on the next truck from Baltimore to Louisiana- making use of their fleet and several of their locations along the way between in Baltimore, MD and Pensacola, FL.
Now little Aiden in Louisiana has a chair that will aid his mobility and hopefully add to his comfort as he fights Pearson’s Syndrome- thanks to a couple families, a foundation, and some folks who have never met- all chipping in to transport this special wheelchair.