Life on the road has become the norm for a Penticton family caring for their very sick little girl.
And it’s not easy.
In her short life, three-year-old Leona Stewart has spent more time in out-of-town hospitals than her own home.
Mom Elizabeth Lysons admits coping with the stress of her daughter’s still undiagnosed illness, putting food on the table for the rest of the family and worrying about where next month’s rent will come from can be overwhelming.
“There’s just trip, after trip, after trip (to the hospital) coming up but it’s our little girl so we have no choice but to be strong,” said Lysons in a telephone interview from B.C. Children’s Hospital. “We’re really strong people and we’re doing okay but we’re definitely in a lot of pain there’s no doubt about that.
“I guess I kind of save it for when I’m alone so I don’t fall apart there and dad (Clayton Stewart) I think is the same way.”
When she is feeling down, Lysons looks to Leona for the strength she needs to carry on.
“She’s my biggest hero because quite honestly I feel more sorry for myself than she does for herself and that’s humbling,” she said.
This is currently Leona’s 19th stay in medical facilities outside of Penticton which has included two trips to Shriners Hospitals for Children in Portland, Ore.
Leona’s symptoms include grand mal seizures, tremors and other movement disorders which she has experienced almost since birth.
She often uses a wheelchair due to her weakness and doctors believe Leona may have mitochondrial disease which affects the neurological system and for which there is currently no cure.
“Some days she is very much like a healthy kid where she can play and jump and other days she can’t sit up or talk,” said Lysons. “But it is progressive. She was healthier, but every cold or flu is definitely a hospitalization now. We’re just seeing more weakness and disability.
“Sometimes she has stroke-like symptoms. Sometimes her left arm will just hang, sometimes she’s twisting in pain where she just screams out. It’s terrible.”
While her father Clayton does work, the couple has found it is much more important he be with them, especially when Leona is undergoing the medical procedures.
“She had to have IV after IV and we’re having to take turns holding her down,” said Lysons. “I let her look in my face and try and calm her while dad’s holding her. We hear a lot that dad should be working, but honestly it would be torture for Leona and I if it was just us right now.”
The couple has two school-aged children at home in Penticton who are being looked after by an older sibling.
Lysons was at a loss for words to express her appreciation for the support from the community, everything from making meals to donating to the GoFundMe account, Hope for Leona.
“Oh my gosh, one day I hit my breaking point and the next day I woke up and everything had changed,” she said after significant donations came in.
After learning about the situation from the COPS for Kids organization, Diana Stirling and Tracey Badger of Penticton also got involved by starting their own awareness campaign, It takes a Village.
Since then, over $2,500 of the $4,000 raised in the last 11 months was donated. The goal is $10,000.
“When the two of us heard about this family and Leona there was absolutely no way we could not do whatever we could to help raise some awareness for the support they need and deserve,” said Stirling. “That’s why we went with the ‘It takes a Village’ because if there is one thing we know about Penticton is it rallies when somebody needs help in a time of need.”
Stirling owns LocoLanding and is giving a $35 pass to anyone donating $50 or more until Feb. 22. The GoFundMe page is gofundme.com/pb1564 and when asked what else people can do to help Leona, Lysons simply answered: “Prayers.”