A couple from eastern Ontario is desperate to find round-the-clock care to keep their baby daughter alive and out of the hospital.
Eight-month-old baby Everley suffers from congenital central hypoventilation syndrome, a rare disorder that causes her to stop breathing up to 14 times a day. It can happen when she’s asleep, sick or when she cries. The disorder affects only 1,000 people worldwide.
“It’s an autonomic dysfunction so her brain doesn’t stimulate her to breathe when she falls asleep,” her mother Sarah Patterson told CTV Ottawa.
A home video shows the frightening experience that the family endures single day. Everley is seen being ventilated during an episode of what her mother said is called a “blue spell” or “death spell.”
“She cries, she holds her breath and passes out, and so we’re having to manually ventilate her numerous times per day,” Patterson said.
Everley’s father, Jordan Yolkowskie, says his daughter’s condition is terrifying.
“You never know if it’s going to be her last day, how long she’s going to live,” Yolkowskie said in an interview in CTV Ottawa. “We don’t know.”
Patterson and Yolkowskie say Everley can be at home, rather than in a hospital, but she needs constant care. She doesn’t have the ability to make sounds on her own, so if she is crying, no one can hear her.
Neither Patterson nor Yolkowskie can work because of their daughter’s needs.
“You literally have to have eyes on her 24/7,” Yolkowskie said.
But that is costly. In less than one month, the couple has spent $10,000 for overnight nurses. The money is a combination of the couple’s own funds, and money raised in their eastern Ontario community of Lombardy.
Now the parents have appealed to the Ontario government for help keeping their daughter of the Children’s Hospital of Eastern Ontario, where she has spent most of her life.
“Our community can’t forever be dishing out money to keep us at home,” Patterson said.
The parents have applied for funding under the Community Care Access Centre, but what’s being offered to them isn’t enough, they say.
“There’s a huge gap in the government for families dealing with children with complex care needs like Everley,” Patterson said.
The family’s MPP, Progressive Conservative Steve Clark, is now pressuring Ontario Health Minister Eric Hoskins to take action. “Please pick up the phone and call the CCAC, tell them to get their act together,” Clark said in the Ontario legislature on Wednesday.
Hoskins said in response that the government is “working on this case, and I commit to the family, that we will do everything possible.”
Patterson said she’s hopes the government acts quickly, as time is running out.
“They have to realize that this is not their average child with complex-care needs,” Patterson said. “We are dealing with life and death every single day, and exceptions need to be made.”
The CCAC told CTV Ottawa that this type of case is new to them and they are working on it. Right now, they are offering the maximum that the legislation allows them to offer, which is 258 hours of home care.
But Everley’s family says it’s not enough, so the CCAC says they are working to find funding elsewhere.
The wait may mean that Everley will need to be brought back to Children’s Hospital of Eastern Ontario’s ICU unit for round-the-clock care.
With a report by CTV Ottawa’s Catherine Lathem
