Taysha A'huille would love to be a TV star.
She's been invited as one of the featured guests on the stage at the Variety Club telethon in Vancouver, but it probably won't happen this year. Her health concerns will likely keep her close to the pediatrics ward at UHNBC during the 23-hour telethon, Feb. 16-17.
Taysha developed breathing problems and was admitted to hospital a few days after Christmas and she's suffered through at least one life-threatening incident since then. Her health concerns pre-empted the Variety Club's plans to send a film crew to Prince George to feature Taysha.
"She was so upset when she found out they couldn't do the show on us but I told her not to worry, we will go down there if she gets better and they might end up putting her on TV, and that got her excited," said Taysha's mom, Tiffany Plasway.
Taysha, who turns four on Feb. 18, has what is thought to be cerebral palsy, the most likely cause of the uncontrollable seizures she's suffered since she was four months old. Cerebral palsy is a disorder that results from damage to the motor control centres of the brain before or during birth, causing muscular incoordination and speech difficulties.
Taysha's problems with her feeding tube through her belly have continued since she was admitted and she's been unable to keep food in her stomach. Continual vomiting was affecting her ability to breathe and she was flown to B.C. Children's Hospital in Vancouver on Jan. 30, where she underwent surgery to have a different feeding tube installed. Plasway is scheduled to fly back Prince George with Taysha today and she will be back at UHNBC for at least a couple more days.
"She's stopped throwing up a lot, which is good, because it was affecting her esophagus and lungs," said Plasway. "I thought she was OK (Tuesday morning) but she was vomiting dry heaves again."
She continues to have seizures every day, and Plasway is with her constantly at the hospital. None of the drugs Taysha has been given have corrected the problem and she likely faces more surgery. Before Taysha's health deteriorated, Plasway had been planning to take her to Vancouver for more tests and had hoped to combine that hospital trip with the telethon appearance. However, the procedures Taysha needs are not scheduled until June and Plasway said she won't have the money to fly back to Vancouver for the telethon.
"I have to make it one year to the telethon, they've helped us out a lot," said Plasway.
Plasway first heard of the Variety Club through a social worker at UHNBC, who realized the family needed financial help to pay for trips to Vancouver, where Taysha was being treated at B.C. Children's Hospital. Variety also arranges for plane tickets and sets up low-cost accommodation in Vancouver for Taysha's father, Travis A'huille, who lives in Fort St. James.
The Giving In Action Society provided Taysha a wheelchair, bathroom hand rail supports for her home, a recliner chair and an adjustable bed, needed because of her swallowing difficulties.
Until only a couple months ago, because she did not own a vehicle, getting Taysha to hospital or to doctor's appointments was difficult for Plasway. The combined donations of the Variety Club, Giving In Action and President's Choice Children's Charity were enough to buy her a 2012 Dodge Caravan equipped with a wheelchair ramp and she no longer has to push her daughter's wheelchair through snow-covered sidewalks and roadways.
"We got it just in time to go back to Burns Lake for the Christmas holidays," said Plasway. "It's helped us big time. My daughter loves driving around and we were able to get to places we needed to and see family."
The Variety Club provides families and organizations with money for equipment not covered by the medical system. Last year's telethon raised close to $7 million. Since 1965, the telethons in B.C. have raised $155 million. This year's telethon will be broadcast in Prince George on the Global network.
"Many are born with these issues and many have accidents too and the wonderful thing is the money that's raised in B.C. stays in B.C.," said telethon spokesperson Bonnie Allan.
Plasway remembers watching the telethon as a little girl with her mother. Her family sent donations a couple of times and Plasway finds it ironic that money is now coming back to her. Without the funding of charities that have stepped forward to help, Plasway admits her life as a single mom would be much more of a struggle. She says there are no words to convey how much she appreciates people's efforts to help Taysha.
"It's been so amazing, I've been through a lot with my daughter and for the longest time I really thought I was alone, until I was told about these charities," said Plasway. "I never thought there would be someone out there to help us."