Boy with spina bifida helps raise $45,000 for children's therapy center

1 year 5 months 3 weeks ago Tuesday, November 29 2016 Nov 29, 2016 Tuesday, November 29, 2016 5:26:00 PM CST November 29, 2016 in Top Stories
By: Emily McCarter, KOMU 8 Reporter
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COLUMBIA — Collin Miller is a 9-year-old boy living with spina bifida. MU Children’s Hospital chose to feature his story at its gala where it raised $45,000 for the children’s therapy center. 

Collin’s mother, Suzanne Miller, said despite having spina bifida, he's just like other children who love going to the park, eating cheese puffs and watching Sesame Street.

Spina bifida is the country’s most common permanently disabling birth defect and literally means “split spine.”

Collin has a rare genetic disorder called tetrasomy 18p, a chromosome anomaly which creates even more medical and developmental challenges. He is one of 250 known cases in the world.

“When we got his diagnosis, even the doctors didn’t really know,” Suzanne Miller said.

She said finding out about Collin’s spina bifida was difficult at first.

“We went to the doctor thinking we were gonna find out if it was a boy or a girl, and then you get a diagnosis,” she said. “You have to mourn what you thought was going to be the ‘perfect’ baby and adjust your mindset.”

Some of Collin’s biggest struggles are walking independently, eating solid food and being in large crowds.

His mother likes to raise awareness of Collin’s condition by attending runs and other fundraising events.

MU Children’s Hospital featured Collin’s story at its third annual gala on Nov. 10. The fundraising night brought in $45,000, just shy of last year’s amount of $50,000.

Children’s Miracle Network Coordinator Kristen Fritschie said the children’s therapy center needs the money because it is growing.

“We did an expansion,” she said. “We basically started an in-patient therapy unit. This is something that not a lot of hospitals have.”

She said any funds raised "will help the program and help the kids that we serve in Mid-Missouri.”

Fritschie said she enjoys getting to know the people featured at each year’s gala.

“I love to be able to see the families and connect with them,” she said. “I can directly affect maybe the quality of their life.”

Suzanne Miller said the gala was very special to her.

“It’s near and dear to my heart, because those people have become like my family,” she said.

Kelsey Okruch is Collin’s physical therapist and came into the Miller’s lives five years ago.

“It’s been love ever since,” she said.

Okruch said she’s developed quite a bond with Collin and his family, since she sees Collin once a week for therapy.

During Collin’s therapy sessions, Okruch said, he works on strengthening, posture and walking. Doctors actually told Suzanne Miller that Collin would never be able to walk, but Okruch wasn’t quite ready to quit on him.

“I said let’s not give up yet,” Okruch said. “He’s made a lot of progress in a short amount of time.”

The day she said that, Collin took his first step in his gate trainer.

Collin mostly gets around in his wheelchair now but spends about 20-30 minutes a day walking in his gate trainer.

Okruch said she wants to keep Collin progressing and staying strong.

“He’s impacted so many lives in such a positive way within our system that I can only imagine he’ll continue to do that,” Okruch said.

Suzanne Miller said she is hopeful for Collin’s future.

“I try to take Collin’s journey one day at a time,” she said. “I want him to be happy, just like every other mom. I want him to be happy and thrive and grow.”

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