When Alan Shukovsky and his wife, Eva, were getting married, their rabbi told them that it was really important for their family to find a personal mission—a cause—they could support throughout their lives.
Alan and Eva Shukovsky welcomed their son Grayson on April 2, 2015, but at around six months they became concerned about his low muscle tone and began searching for answers. They visited specialists, ran batteries of tests, and scoured online sites.
But for two years a diagnosis eluded them.
“We went through it all. We saw a renowned pediatric neurologist. We went through the whole deal—MRIs of the brain, whole exome sequencing, every conceivable test. It was scary,” remembers Alan.
Finally, after the third round of whole exome sequencing tests, Grayson received his Rett syndrome diagnosis. “The doctor told us not to go crazy reading stuff online because it always freaks people out. … But I couldn’t control myself. I started reading about it and then I called Eva and told her not to read about it. It was almost exclusively about girls and the little we could read about boys was terrifying and dire. They acknowledged that some boys have it but some didn’t mention boys at all,” shares Alan.
“Because I’m a veteran, we had supported the Wounded Warrior Project, but we decided to realign with Rett syndrome and do all we can to raise money for Rett and advocate to give boys a voice.”
That’s when he found the Rett Ride Across America. He called KC Byers two months before the ride and volunteered to cycle with him from Austin, Texas, to Jacksonville, Florida, more than 1,400 miles. When he told KC he had not been training, KC later shared he didn’t think he’d last two days … but boy was he wrong.
“I felt out of control. I wanted to do something—to focus on something other than the helplessness of Grayson’s diagnosis,” says Alan. The Rett Ride Across America was the perfect fit. “We got along really famously from the get-go. It was just a great experience. One of the most awesome experiences of my life, and I’m going to ride again this year, my third year with KC.”
To help with Gray’s care, Alan and Eva decided to move the family to Florida so Gray’s grandma—whom he refers to as a “Super Grandma”—could move in with them to help. They chose the Texas Rett Clinic (a Rettsyndrome.org Center of Excellence)—one of 19 Rett Clinics—to oversee Gray’s care, primarily because it is one of the few centers with experience treating boys; they also have a local team who manages his immediate care.
Alan understands that boys are often overlooked in many medical and Rett communities, but he’s out to change that. “I’m excited to join the [Rettsyndrome.org] board to advocate for boys, but not to the detriment of girls. I’m just as excited to see them. I appreciate that Rettsyndrome.org, more than any other organization I’ve spoken to, has worked to include boys.”
“It’s incumbent upon our Foundation to empower all families affected with Rett syndrome,” shares Executive Director Melissa Kennedy. “The resources we offer need to be inclusive of both females and males; now as we welcome Alan to the board, that will be more accurately reflected.”
“Alan is a strong voice for all males with Rett syndrome, and we are very excited to have him at the table,” shares Rettsyndrome.org Board Chair Bill Babiarz. “Alan’s vast experience in sales and marketing, and his passion for raising awareness on behalf of boys with Rett, will make him a valuable contributor to our board and allow us to achieve our vision of creating a world without Rett syndrome.”
Alan and Eva stay focused on that vision as he works toward incremental changes that have made a big change in Gray’s life. The prognosis is worse for boys, and the regressions more challenging, but at one point, Gray was having 20-50 seizures a day. Now that number is almost zero, thanks to a strict Ketogenic diet.
“Each day Grayson finds a way to deliver a giggle or his signature smirk, and everyday Eva and I are optimistic we’re on the cusp of some new type of treatment or genetic therapies, or perhaps even a cure.” Their family hashtag is #anewdayforGray because they’ve chosen to focus (and believe) on what each day brings, always hoping that tomorrow is a better day.