‘It’s been really neat to watch because we never thought we would see it.’
Wallis Snowdon, with files from Elizabeth Hames, CBC News January 1, 2017
Kim Moore watched in disbelief as her daughter Evelyn took her very first steps.
It was a moment doctors told her would never happen.
“The past few days we’ve seen Evelyn walk,” the Edmonton mother told CBC Edmonton’s Radio Active show Friday. “It doesn’t look like two feet on the ground but it’s pretty beautiful.
“She’s just doing really phenomenal.”
Evelyn — also called Eva by her family — was diagnosed with cancer at four months old.
A nurse noticed too much movement with the child’s hips, then a doctor found a lump protruding from her spine.
The stage four tumour couldn’t be removed, so the baby underwent eight rounds of chemotherapy.
The cancer went into remission, but the girl was paralyzed below her arms.
Moore says doctors told her that Evelyn would likely “army crawl,” pulling herself around with her arms, until she was about two. Wheelchairs would come after that.
But baby Eva and her family had different plans.
She struggled with crawling, growing frustrated by her lack of mobility.
There were no wheelchairs small enough for her tiny body so Moore and her husband Brad built their own.
They attached a second-hand booster seat to a kitchen cutting board, then put casters on the bottom and small wheels from a children’s bike on each side.
Now, one and half years old, Eva is learning to use her legs, with the help of a special standing frame made of steel and soft foam. The full body brace keeps her toddler’s legs extended and her torso supported.
“Often we don’t listen to the experts, which probably isn’t the best advice, but if we set goals, we achieve them,” said Moore. “We have got all the equipment that we needed to support our little disabled daughter, and that’s taken a lot of stress off our plate.”
|It made us realize how beautiful this world really is|
Seeing her daughter walk is just one of many changes in the family’s life since their story went international in August.
CBC video of Eva skillfully wheeling around in her chair was viewed more than 30 million times.
In the weeks that followed, the family amassed nearly $8,000 in private donations for Evelyn’s medical care.
“It made us smile and realize how beautiful this world really is,” Moore said. “People that didn’t even know us were mailing us letters and blankets, and contributing to our Gofundme account. We’ve had a lot of support and the support has come through people and not the systems that are in place in Alberta.”
|It’s really opened our eyes|
Moore says she and her husband have struggled to find the right resources for their daughter. The system is complicated and bureaucratic, and although financial subsidies exist, they aren’t enough to cover the total cost of equipment. The bulk of the donated money is already gone.
“That’s a challenge for us, just adjusting to the amount of money we have to pay in order for our daughter to live a normal life, because that’s something she needs to live.”
The cancer diagnosis and the challenges that followed have put a strain on the young family. Both parents have taken leave from work, and money is tight.
Without the support of charity groups like Kids with Cancer, which has helped cover the cost of their medical and housing costs, Moore has no doubt they would be broke.
“The most important part right now is piecing ourselves back together so we can piece our family back together,” she said. “After you’ve had a tragic event you need to take time to heal yourself from the trauma in order to continue on. It’s taken us a long time for us to understand that.”
At the end of the hardest days, Moore finds hope in her daughter’s strength as she holds her tiny hands and watches her shimmy, one foot at a time, across the living room floor.
“It’s been really neat to watch because we never thought we would see it,” said Moore. “It’s really opened our eyes to see things differently with a lot more hope and positivity.”
Source CBC News