Owasso girl with rare growth disorder shares her story

An Owasso girl with a rare genetic disorder had three major surgeries in less than a year.

Carissah Holland has mucopolysaccharidosis, or MPS VI. She celebrates her 15th birthday on Saturday.

Carissah’s Day-to-Day Life

These days, Carissah's focus is on history, math, and the upcoming science fair.

“We just finished reading about the American Revolution,” she said.

She's a diligent student with big dreams.

At 3'9", adjustments are made around the house, so things aren't out of her reach.

"I set the table for dinner every night so the napkins and plates are in here and the silverware is right here,” Carissah said as she walked through the kitchen.

And she works hard every day, so her dreams won't be out of reach, either.

"I want to be an engineer or a doctor when I grow up,” she said.

"Seems to be a happy kid and everything that she goes through. I would not be able to have that attitude,” Scott, Carissah’s dad, said.

Carissah’s Health Journey

Her parents, Scott and Angela, adopted Carissah from China in 2012.

Three years went by, full of doctor's appointments, before her diagnosis of MPS VI, which impacts her organs and causes growth abnormalities.

Carissah wore a back brace for nine years, has endured 15 surgeries, and gets weekly IV infusions.

In 2023, she had back surgery scheduled, but Neurosurgeon Dr. Andrew Jea at OU Health, realized neck surgery was needed first, to avoid paralysis.

"He knelt down in front of her and he just explained it on her level and he said, 'I know this is hard Carissah. I know this is scary. But I'm going to take great care of you,’” Angela remembered.

He performed a surgery that's most commonly used after trauma.

"What we did was, we shaved off bone at the bottom part of the skull, and the top of the spine to make room for the spinal cord and the nerves,” Dr. Jea said.

She also had lower spine decompression and fusion surgery, and surgery for bilateral knock knee hardware within a 10-month period of the other surgery.

"I'm feeling great,” Carissah said.

Recovery went so well, Carissah and Dr. Jea were able to enjoy an OU game together last fall.

“I look forward to the many great things that she's gonna do as she grows up,” he said.

A Family’s Faith

In a note Carissah’s parents share with her school teachers, they express, “We believe Carissah was fearfully and wonderfully made. God has given her an incredible spirit to deal with all that she faces in her life!”

With her pictures in calendars and pamphlets, Carissah has found a space to share her voice, which she uses to advocate for others with MPS, leaning on her faith to guide her.

"I put my faith in God so that's what really motivates me,” she said.

"I think God called her to be a part of our family,” Angela said.

The Hollands say Carissah’s friends and school, and their church family, have offered great support.

“Doing things like writing her notes, saying they’re thinking about her, praying for her. It’s just incredible,” Scott said.

What’s Next

Both of Carissah's older sisters will be home from college to celebrate her birthday. Angela said Carissah has been cleared to drive, so Carissah is working toward getting her learner's permit.

“There’s always kind of something on the horizon, but thankfully right now, she has a break, and she’s doing really well,” Angela said.