How a young Calgarian’s battle has inspired the generosity of hundreds

15-year-old Lexi Whyte sits in her bed at the Alberta Children’s Hospital, wincing from pain as her mother holds her hand. The promising ballerina has been suffering with a non-cancerous bone tumor in her skull that has caused an incredibly painful rare nerve condition. She has been hospitalized for her illness since May 2011.

The pain is so bad that Lexi often has to bite down on a wet cloth to prevent her teeth from chipping, says Lexi’s Mother, Jessica Taylor. “Her hearing is so sensitive that even breathing around her makes her cry.”

While Lexi deals with the physical pain, Taylor – an entrepreneur who has been unable to work since Lexi was admitted to the hospital – has been struggling with the financial burden.

“You are forced to make a decision between holding your kid’s hand while she suffers and going to work to pay bills,” Taylor says. “It is a decision that no parent should ever have to make.”

Recognizing the family’s need, close friends sprung into action in mid-January, creating a Facebook page asking for donations and organizing several events to help raise the money needed for Lexi’s care.

In just one short week, the family has received an estimated $20,000 in donations, says Barb Cox, who updates the “Love for Lexi” Facebook page.Lexi Whyte was transported to Toronto’s Hospital for Sick Children in late January to see what could be done to treat her painful nerve condition. She arrived back in Feb. 10.
Photo courtesy of:  Love for Lexi.

Mike Kruse, a close friend of the family says, “All it took was for Jessica to say ‘I think I might need a fundraiser to help pay for Lexi’s bills,’ and immediately there was a whole bunch of us who stepped up and started to find ways to contribute.”

Kruse’s band “Mr.Furious,” and several other local artists will be taking to the stage at several venues throughout the city during the month of February to add to the growing pile of donations the family has already received. Other events planned for Lexi include a head shave in conjunction with the Kids Cancer Care Foundation of Alberta (50 per cent of the proceeds go to the foundation, and the rest goes to Lexi), and several silent auctions, raffles and chocolate sales.

Kruse’s girlfriend, Joey Phillips, will be shaving her shoulder-length jet-black hair at an event on Feb. 18 to raise money for Lexi and other children in similar positions. “We all have something to give, whether it’s positive energy, a donation, or in my case my hair,” she says.

“It definitely lightens the heart,” Kruse says. In a society that seems so apathetic, he says “it’s impressive to know that we can still step back and care for one person.”

For Lexi, the Facebook page has become a source of strength. The numerous posts of support – which come from people as far away as Australia – let her know that she is not alone and that she can get through this, says Taylor, who reads posts on the page to her daughter every night.

“She lies in bed and stretches her feet so that she can one day dance again,” Taylor says. “She is all about the future.”

While the fundraising has helped to brighten the future for Lexi, her medical complications have not been solved. Lexi’s disease is so complicated that doctors at the Alberta Children’s Hospital have exhausted all treatment options and are simply chasing symptoms at this point, Kruse says.

This is not as simple as raising a lump sum of cash, says Kruse. “This is a band aid to help the family get through (these times) and will be an ongoing concern until Lexi does get better.”

The family is currently awaiting transfer to the SickKids Hospital in Toronto in hopes that someone will know how to stop Lexi’s pain. Without community donations, the transfer – which is not covered by Alberta Health Services – would mean giving up the family home, Taylor says.

“It affords me the ability to have a home to bring her to once she is well,” Taylor says.

Despite her constant battle with intense pain, Lexi is still known for her bright smile, a sign that brings hope to all those that are working to raise awareness of her situation.

“I want to thank everyone from the bottom of my heart for allowing me the time to watch those smiles,” Taylor says. “Without the fundraising I wouldn’t be able to see them.”

Updates:

Lexi Whyte was transferred to Toronto’s Hospital for Sick Children in late January and returned to the Alberta Children’s Hospital on Feb. 10. 

Mother Jessica Taylor wrote in an email that the Toronto trip was “also at a loss.” Despite further suggestions, she said they are looking at the possibility that Lexi may be “undiagnosable.” Fundraising efforts will be used to access testing in the United States and to continue paying for medications, she said.

Correction: It was incorrectly stated in the February print edition of this article that Lexi Whyte was suffering from a brain tumor. She has a bone tumor in her skull. We apologize for the error.

tbrown@cjournal.ca