Ryan Holliday is just like any other child loving life at the ripe young age of 9. He likes to laugh, play Minecraft and talk with his friends.
The Flower Mound boy is in second grade at Prairie Trail Elementary School where he received the wish of a lifetime last week. Ryan’s classmates, family and friends met him in the school’s library to celebrate with him.
“He’s like a little celebrity at school,” Ryan’s father David Holliday said.
And although Ryan is usually chatty, getting one of his biggest dreams to come true through the Make-A-Wish Foundation left the sandy-haired boy speechless.
Of course, a trip to Disney World and the Legoland hotel might do that for any child his age.
But Ryan isn’t just like all the children at school. He has Pfeiffer Syndrome, a condition he’s had all his life. Pfeiffer Syndrome results in early fusion of certain skull bones as well as those in the hands and feet. It often leads to bulging, wide-set eyes, a high forehead and other physical characteristics.
For Ryan, it has meant 14 surgeries to enlarge his skull, a tracheotomy, a hearing aid, a feeding tube and intense bouts of pain.
“Like a trouper he bounces back,” Holliday said of his son. “As he gets older he’ll bounce back faster.”
Ryan’s next surgery will be done to correct his hips. This summer, he likely will spend weeks in a body cast.
Most days, however, are fairly regular. Overnight Ryan is fed formula through a feeding tube that goes directly into his stomach. Pfeiffer Syndrome has left him with a misshapen palate and he’s not crazy about eating, but he does love pepperoni.
After about 45 minutes of breathing treatments, Ryan heads to school, where accommodations are made so he can hear his teacher.
This week, Ryan and his family are planning his dream vacation made possible through Make-A-Wish. Manu Shahi is a local volunteer who served as a link between Ryan’s family and the foundation during the process.
“He wanted to meet the President,” she said, adding that the waiting list to meet Obama is so long that his administration isn’t taking any more names.
But that isn’t stopping Ryan from receiving a wish. He’ll go to different Disney parks – he already has meetings scheduled with certain characters – and he’ll stay there for 5 nights. One night will be spent at Legoland.
“He’s such a ball of energy,” Shahi said of Ryan.
She volunteers with Make-A-Wish in honor of her daughter, who was a recipient of a wish years ago.
“I love kids,” Shahi said. “Personally, my mantra is you give love to these kids and they become good citizens and this becomes a better world.
“A – nobody deserves that (suffering). B – if we can make magic happen … they will never forget this for even a day in their life.”
Holliday said it will be nice for Ryan to have something that in some ways counterbalances the everyday medical struggles. For the family, a strong support system at the local church and other families who are affected by Pfeiffer Syndrome is priceless. Having others see Ryan just as they are helps too.
“I know his peers that he’s at school with don’t see him as any different,” he said.
Despite the unbelievable burden of medical procedures and pain, Ryan remains positive, Holliday said.
“He’s always talked about what he wants to do in the future,” he said.
For a while, the youngster wanted to be an engineer. These days he’s aiming for a life he may already be living.
“Now when I ask him that, he says he wants to be a superhero,” Holliday said.