VANCOUVER- Six-year-old Brooke Willisson is just like any other little girl – she loves to paint, dance, play with her Barbies, make-up and jewelry and use her iPod.
“She’s a typical six-year-old little girl who just loves typical six-year-old girl things,” said her mom Rachel.
But Brooke is not a typical toddler. She has Crommelin Syndrome, a condition so rare there are only seven people in the entire world who are diagnosed with it.
Brooke was born missing hips, femurs, fibulas and both of her arms. She was only diagnosed when her geneticist was contacted by another geneticist in Ireland who was treating a boy with a very similar condition.
Rachel said they found out Brooke was different when she had her 21-week ultrasound.
“They told me they couldn’t see her arms and her legs were shorter than they should be,” she said.
Rachel and her husband Craig travelled from Cranbrook to Calgary for further testing. “We were offered termination, by law,” she said.
But the couple, who had spent 10 years trying to conceive their first child who was almost two at that point, knew that was not an option for them. Rachel said their faith kept them strong during this difficult time.
“We thought we would just need to do what needed to be done,” she said.
But Rachel said they have received support from medical teams in Cranbrook and Calgary and from family and friends.
Now Brooke needs a customized wheelchair to help her get around.
“Her ‘knees’ are up where her hips should be,” said Rachel, “so everything is a big distance, everything is a lot more work.”
The wheelchair will help her move around easier and she can control it by herself.
However, the chair costs $40,000.
“It’s a huge amount,” said Rachel. “It’s like two of my minivans put together.”
She started a campaign on GoFundMe and has already raised more than $7,000.
“It isn’t a want, it’s a need, and it’s a need for a child,” added Rachel.
They are getting just over $14,000 from the At Home Care Program and need to raise the rest themselves.
Rachel said she has been overwhelmed so far by the support from people she does not even know.
“I remember sitting in the clinic when we first found out about Brooke and I said to Craig ‘what if she’s not accepted?'” said Rachel. “But I think to watch her be so loved and so admired and to read everyone’s comments about us and about her is such an amazing feeling.”
GALLERY: Brooke Willisson (courtesy of Rachel Willisson):
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