An Okotoks preschooler could have the opportunity to take steps her family never thought possible in the new year.
Claire Sonnenberg is three years old. When she was born, a lack of oxygen resulted in spastic cerebral palsy, brain damage that prevents the normal development of motor functions. Her mom, Stephanie Sonnenberg, said she is unable to talk, walk, or play like typical children her age.
“It creates challenges in her everyday life,” said Sonnenberg. “She needs help with everything from getting dressed to eating to playing.”
Claire uses modified toys to play and got to go door to door on Halloween using a modified children’s powered car to get around and pushing a button to say, ‘Trick or treat,’ she said.
“Basically everything in her life we have to adapt so she can do what the rest of the kids are doing,” said Sonnenberg.
Right now, Claire has physiotherapy and occupational therapy, as well as speech and language therapy five days per week. For communication, the family is trying to get her an iPad, but it can take a while for referrals to come through, she said.
In addition to her daily sessions, Claire also has conductive education two afternoons per week. It involves teaching her how to use the body tone she has to make sitting up or walking possible.
“Most kids you don’t want them to do that, but with cerebral palsy this technique teaches her to use what she can, what she has,” said Sonnenberg.
For instance, typical toddlers will arch their backs and lift their knees to learn how to walk by cruising along furniture and other items, but Claire isn’t able to take those steps, she said. Instead, she pushes a ladder and wears leg braces, using her tone to balance.
She uses a walker but is making progress and learning how to take steps on her own, said Sonnenberg.
They’re hoping to see her learn how to do more on her own soon, thanks to a stem cell treatment Claire will be receiving in Arizona on Jan. 13.
“We’ve done a lot of research on stem cells for cerebral palsy and the research shows things like better vision, better cognitive awareness, it helps their tone,” said Sonnenberg. “Kids have learned how to sit, how to talk, how to walk.”
Armed with that knowledge, Claire’s parents banked umbilical cords from her younger brothers, Brody (2) and Parker (five months old). They put her on a waiting list for the treatment.
This round of stem cell treatment won’t use those umbilical cords, though – it’s a different program, she said. Doctors will actually use a 14-gauge needle to remove stem cells from Claire’s own hip and then insert them through her nose into the spinal cord to be directed to the brain.
“They will go toward areas that are damaged and they will attack that,” said Sonnenberg. “They try to regrow. They can’t fix the cells that are broken, but they can grow around them.
“It generates new tissue for her brain to learn. This could be life-changing.”
She said it could be as little as allowing her to reach better or have more control over her body, or as much as giving her the gift of speech or walking.
Right now, Sonnenberg said Claire has a strong will to get on the move, and the look on her face makes it clear she knows what she needs to do, but her legs don’t co-operate.
“She tries to move forward but her leg might get stiff, so she has to work really hard and concentrate to make her leg lift and take the step,” she said. “Hopefully this can make the pathway open so it just happens, because now what’s second nature to us isn’t second nature to her.”
There are no limits to how the treatment could help, she said. They’ve seen videos of children with the same type of cerebral palsy after their treatment through a support group they belong to, and the results are all positive, she said.
The procedure is quick and non-invasive. The Sonnenbergs will fly in to Arizona on the Sunday evening, Claire will have surgery Monday and they’ll be home Tuesday, she said.
Once they’re home, they’ll have a two-week stay in Edmonton where Claire will undergo intensive therapy.
“Her brain will have so many more cells, so they want her to learn and train those cells,” said Sonnenberg.
Therapy will include wearing an orthotic suit with bungee cords that helps mimic the muscles in Claire’s body, she said. The hope is her brain will learn the movements being made and she will be able to continue them on her own.
It would mean the world for the three-year-old, who Sonnenberg said is a happy child who loves to play peek-a-boo and sing, and who has a daredevil streak – she loves to be hung upside down, swung around, and to go tubing behind boats on the water.
“Anything that goes fast she’ll be screaming and laughing,” said Sonnenberg. “She’s just a really fun girl.”
Sonnenberg set up a GoFundMe page to help pay for Claire’s procedure and therapy, and their $15,000 goal was met in a matter of days. Overwhelmed, she raised the goal to $25,000, which would cover more medical costs.
She said they never imagined Claire’s story would have such an impact on people.
“We’re touched by how many people have helped support us and how many lives Claire has touched,” said Sonnenberg. “It’s amazing how many people we’ve reached and how many people in the community have reached out to us.”
The fundraising page can be found at https://www.gofundme.com/f/stem-cells-for-claire-bear
