The family of a young Cranbrook girl with a rare condition is hoping to get a boost as they fundraise for a specialized wheelchair.
Brooke Willisson is six years old and was born with crommelin syndrome, which is so rare there have only been seven people diagnosed with it in the world. Brooke was born missing hips, femurs, fibulas and both arms.
The wheelchair isn’t cheap as it is customized for Brooke. They are raising $26,000 through the fundraising site gofundme.com.
“I’m getting a little bit scared,” admitted Brooke’s mother, Rachel Turner-Willisson.
“We’re at $12,200, the goal for gofundme is $26,000. The entire price to do the wheelchair is actually going to be a little bit more. We thought $40,000, but it’s actually going to be a little bit more than that.”
The reason it will be more is that they hadn’t yet factored in some changes they will have to do in their home and on their van to make it wheelchair accessible.
“The chair is measured and fit for her,” Rachel said. “The controls are going to be at her feet and she’s going to be able to control those with her toes. She has levers that are going to be at her chin and shoulders and that manoeuvres the feet from down low where she’ll be able to get on it and control right from ground up to counter height, where she’ll be able to come up and cook with me.”
Rachel said Brooke will be able to go up to the counter at the store and purchase her own things.
“She’s so independent now, just for who she is,” Rachel said. “She is determined and she is an independent little girl in this little two foot package.
“She’s going to become even more independent with this chair. She’s going to be able to go places and be part of things that she never could be a part of.”
The chair should also last a long time.
Rachel said that cognitively, Brooke will be able to interact and learn more because she will be at eye level with people.
“When you’re only two feet tall you’re looking at people’s shins or you’re looking up at people,” Rachel said. “To be able to look at someone in their eyes, that is such a spectacular experience to begin with. Imagine never being able to do that and then all of a sudden… She really likes to be able to look you in the eyes when she’s speaking with you. It’s really beautiful.”
But the wheelchair is not only about becoming more independent for Brooke, it is also about her development. They don’t want Brooke to wear down her joints prematurely and not be able to use them as an adult.
“Every step is an eighth of a step we take,” she said. “So for her to get halfway down the mall is extremely exhausting. And because you don’t have hips, it’s her cartilage and her ligaments that are forming a pseudo hip. But that’s not as supportive as it would be if it were a bone.”
They are hoping to have everything in place and order a chair as close to summer as possible. Rachel said that since the snow has melted Brooke could start learning to drive the wheelchair and master it by the time school starts.
“That’s kind of our dream for her, is that she could have it soon so that she could have it mastered in time for September.”
To find out more information and/or donate, go to www.gofundme.com/7i0uz0.