MUNROE FALLS — While many children have probably wished for a chance to have a Star Wars X-Wing fighter, most kids don’t actually get one.
Noah Lucardie, 7, now has one of his own, custom-made by Akron MakerSpace and Magic Wheelchair to fit over his own wheelchair. It was presented to him during the recent Wizard World in Cleveland.
“It was crazy,” said Kelsey Lucardie, Noah’s mother. “It was totally more than we expected, that’s for sure.”
Noah described some of the features on his new X-Wing, which is still being fine-tuned by Magic Wheelchair and Akron MakerSpace.
“There’s a smoke machine, there is sound, lights, the wings go up and down, BB-8 moves,” Noah said.
The X-Wing can be placed over and removed from Noah’s wheelchair.
Noah said he was eager to show his friends at Riverview Elementary School his new X-Wing up close and personal; his classmates saw a news clip of him receiving it already. He’s also eager to take his fighter on the sidewalks on Oct. 31.
“I want to get lots of Halloween candy,” Noah said.
Noah was dressed as an X-Wing pilot during Wizard World, and said he was a huge Star Wars fan.
His favorite aspect of the series? “I would say the space battles,” he said, adding, “I love the lightsaber battles,” making lightsaber sounds.
The gift was well-timed, Kelsey said. Noah, whom Kelsey and her husband Nathan Lucardie adopted about 4 1/2 years ago from China, was diagnosed with Spinal Muscular Atrophy, “which is in the family of muscular dystrophy,” Kelsey said.
“They were super dire about his prognosis,” Kelsey said of the doctors treating him. “They told us he would never improve, that we should enjoy what time we had with him.”
However, about 1 1/2 years ago, a genetic therapy became available to treat someone like Noah, Kelsey said. The Spinraza treatment includes getting a spinal tap every three months. However, the costly and difficult treatment was “an amazing gift” and has already shown results.
“He can hold his head up better,” she said. “He is so much stronger.”
The treatments are $800,000 a year, Kelsey said.
“We had to find insurance which would cover this,” she said.
He has become so much stronger that his doctors started working on him standing, Kelsey said.
“But this was uncomfortable because his legs were so bent,” Kelsey said. “This past fall, he had his legs double casted. He never gets down and he never gets discouraged, but it was a rough fall for him.”
However, the casting improved his legs, she said.
“His legs look great,” Kelsey said.
In addition, the family will take a trip to Hawaii courtesy of Make a Wish in the near future, Kelsey said.
Christine Getman, executive director of Magic Wheelchair, said the organization was founded in 2015, and that it has served more than 150 families across the nation.
“Ryan and Lana Weimer, the founders of Magic Wheelchair, have five children, three of whom were born with Spinal Muscular Atrophy, which requires the use of wheelchairs for the entirety of their lives,” Getman said. “Each Halloween, Ryan made the biggest, ‘baddest’ costumes he could for his sons, Keaton and Bryce. Once news of these costumes spread, Ryan began receiving requests from parents around the world asking if he would transform their kids’ wheelchairs into ‘magic.’ In 2015, Ryan and Lana decided to make that happen and started Magic Wheelchair, the non-profit organization that seeks to put a smile on the face of every child in a wheelchair.”
Parents wishing to find out more can visit www.magicwheelchair.org online.
“Because some of the kiddos have life-threatening illnesses, it is the goal of Magic Wheelchair to fulfill every single request as soon as possible,” Getman said.
Kelsey said she had been researching possible costume ideas for Noah when she found out about Magic Wheelchair and, later, Akron MakerSpace. She contacted Magic Wheelchair to discuss ideas for Noah.
Noah had this to say to Akron MakerSpace and Magic Wheelchair: “Thank you so much. I couldn’t have done this without them. It’s like a dream come true.”
Reporter April Helms can be reached at 330-541-9423, firstname.lastname@example.org, or @AprilKHelms_RPC