Local boy with rare disorder granted wish to Disney

August 19, 2018 | 2:10 pm

Updated September 10, 2018 | 10:50 pm

Video by Alexander Clark

[brid video=”280481″ player=”13623″ title=”MakeAWish Owensboro Times”]

A smile immediately comes over Brady Elliott’s face when he hears Mickey Mouse. Brady, who was diagnosed with Aicardi-Goutieres Syndrome (AGS) at 15 months old, requires a wheelchair, is non-verbal and has cortical vision impairment. That’s why Brady responds mostly to sound, especially Mickey Mouse, or even the introductory scene of Disney movies where Tinkerbell flies around Cinderella’s castle.

AGS is is a rare genetic disorder that affects the brain, spinal cord and immune system. It is a type of leukodystrophy, a group of conditions that affect the white matter of the brain. Most children with AGS end up with mild to severe intellectual or physical impairments like Brady.

According to Brady’s mom, Candace, only 500 cases of AGS have been diagnosed worldwide — and two of those cases are in the Elliott’s home. Brady’s older brother, Chase, also has AGS, but was misdiagnosed with cerebral palsy for eight years. In fact, it wasn’t until Brady’s diagnosis that Candace and her husband, Brian, had their older son, Chase, tested for AGS.

“With AGS, you have to get used to a new normal,” Candace said. “Brady will get sick and lose more of his abilities. Something as simple as the flu can take the life of a child with AGS.”

After a series of medical events that the Elliotts say almost took their son’s life, they began the process of applying to Make-A-Wish for Brady to travel to Disney World to meet Mickey Mouse.

Make-A-Wish is a foundation that grants the wishes of children diagnosed with critical illnesses. Make-A-Wish granted 15,300 wishes last year alone – on average, one every 34 minutes.

The Elliotts received word in early August that Brady’s wish was granted, but on Saturday, they celebrated with those closest to Brady by throwing a Mickey Mouse themed party. Guests included Brady’s teacher and classroom assistants, three of his therapists and even his bus monitor.

“He’s just a very, very special kid,” said Andy Gamblin, Brady’s Owensboro Public Schools bus monitor for the last two years. “He is a joy to have on the bus.”

Laura Beth Cook, who has been teaching special education at Foust for four years, said this was the first time she had attended an event like this for a child.

“It means a lot to see him so happy,” Cook said. “And to see him interact with everyone in his life is amazing.”

Cook, along with her classroom assistants, Shelly Riley and Emily Pogue, often use Mickey Mouse in the classroom to cheer Brady up.

“We might be in the classroom eight hours with our kids every day, but they are always on our mind,” Pogue said.

Brady’s wish was the first granted wish for local Make-A-Wish volunteers Lori Brubaker and Cynthia Schadler.

“This community has really come together to help this family,” Brubaker said. Party Paper Place donated a life-size Mickey balloon creation for the party, and Walmart donated funds for a cake and Mickey Mouse toys for Brady.

Both Brubaker and Schadler volunteer their time to the local chapter of Make-A-Wish, something they find rewarding when able to grant wishes for families like the Elliotts.

They encourage the community to support Make-A-Wish, which is hosting a fundraiser called Boilin’ in the Boro on September 15. Last year’s event raised enough money to grant at least six wishes, according to Brubaker.

The Elliotts said Make-A-Wish has been wonderful to work with. Their older son, Chase, received a wish in 2011 to travel to New York City to meet Elmo at Sesame Street.

“They think about every little thing,” Candace said. “They even think of everyone in the family.”

The Elliotts have five children total, and Candace said Make-A-Wish will ensure all five children feel special, not just the wish kid, and not just the two boys with AGS.

“Siblings of special needs kids are often overlooked,” Candace said. “But Make-A-Wish will give my other kids gifts too and spending money for souvenirs.”

Candace said this wish will allow her family to take a vacation together that each person can enjoy.

“There are so many trips we can’t take,” Candace said. “We can’t go camping, we can’t go to the beach. We can all do this [Disney] together.”

Make-A-Wish will take care of all of the Elliotts needs: a ride to the airport, flight to Orlando, passes to Disney World, stay at Give the Kids the World (an 84-acre, non-profit resort in Central Florida that provides weeklong, cost-free vacations to children with critical illnesses and their families), medical equipment and more.

“Every little thing is taken care of,” Candace said.

August 19, 2018 | 2:10 pm

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