Two Year Old Alice Ready to Roll for SickKids

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Out in Write Field

Two Year Old Alice Ready to Roll for SickKids

 

Alice Crawley, seen here helping man the Team Alice booth at this year’s Strawberry Festival,  was born with a rare, potentially life threatening liver disease that affects one in 18,000 newborns.

Alice Crawley came to the Strawberry Festival looking for supporters to help out when she gets pushed around the streets of Downtown Toronto in her stroller next month to raise funds for the hospital that has become her lifeline.

Shortly after her birth, Alice was diagnosed with biliary atresia, a potentially lethal liver disease that affects one in every 18,000 babies.  With Dr. Vicki Ng and her Hospital for Sick Children team performing a successful Kasai procedure, the progress of the affliction was halted. Alice’s mother Bonnie and her husband Marco are grateful for the research that enabled their daughter to live. “Forty years ago there would have been no hope at all, she would have died of ‘undetermined liver failure’,” said Bonnie.

But the damage done before the diagnosis of this difficult-to-pinpoint disease can’t be reversed and Alice will need a liver transplant before she turns 18. Fortunately, finding a donor for her transplant won’t be a problem. “They need to transplant part of a healthy liver from a living person with the same blood type, and her father has the same blood type as Alice,” said Bonnie. “Twelve weeks after the transplant her liver will be back to its normal size.”

Bonnie, who spent her formative years in Stouffville but recently resettled with her family in Etobicoke, brought Alice to her former home town for the Strawberry Festival to help raise funds for Team Alice in the Canaccord Genuity Great Camp Adventure Walk in support of the SickKids Hospital Foundation September 23. Bags of ‘gently used’ adult and children’s books donated by team members, friends and family were offered in exchange for a donation. They also held a raffle, with a total of $1,664  collected in total. “Many people came to the booth who were former SickKids patients or parents, there were lots of emotional stories,” said Bonnie.

The need is great at SickKids, long regarded as one of the top five paediatric hospitals in the world. The facility is outdated and stretched beyond its limits, with a $1.6 billion total rebuild required over the next decade. The SickKids Foundation is responsible for fundraising $600 million of that total.

For the Crawley family, getting behind the fun filled walk is a way of helping show their appreciation to the hospital that continues to do so much for them. “They’ve been so incredible it’s difficult to put it into words,” said Bonnie of SickKids. “Every one working there is a special person, they tend to the children’s comfort. They stick around after Alice’s  treatments  to read a book with her.”

The SickKids staff  has also been there for Alice and Marco as they struggled with the reality of their daughter’s condition. “We had some horrible days there, the worst days of our lives, but  they were so comforting to us, we always felt hand held,” said Bonnie.

Alice returns to Sick Kids for a few days for check ups every three months, or whenever  she shows signs of fever or other irregularities. “They have to be sure there is no liver infection as the damage could be life threatening,” said Bonnie, who noted that the family must limit its travels and be careful not to allow Alice to be exposed to germs.

Team Alice raised $7,600 for the 2016 walk, and is already well on its way to hitting their target of $10,000 for this year’s event. “We’ll be well above that amount,” said Bonnie.

Anyone wanting to support or join Team Alice  can do so by visiting:

www.support.sickkidsfoundation.com/goto/teamalice2017

For more information about the Great Camp Adventure Walk  visit:

WalkforSickKids.ca  or #WalkforSickKids on Twitter.

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