Her smile is picture perfect, and in moments eight-month old Everley will melt your heart, “just to see her face is incredible,” boasts Everley’s Dad Jordan Yolkowskie.
Everley was born with a rare genetic condition called Congenital Central Hypoventilation Syndrome (CCHS), affecting only 1,000 children world-wide.
“Her brain doesn’t stimulate her to breathe when she falls asleep,” says Everley’s Mom Sarah Patterson, “she’s having blue spells which have been labelled ‘death spells’, she cries, holds her breath and passes out, so we’re having to ventilate her numerous times per day.”
The ‘death spells’ can happen up to 14 times per day, “every day you don’t know if it’s going to be her last day, how long she’s going to live, we don’t know,” says Yolkowskie.
Everley doesn’t have the ability to make sounds on her own, so if she cries no one hears her, she needs eyes on her at all times. Doing that is costly. Everley spent the first seven-months of her life at the Children’s Hospital of Eastern Ontario (CHEO), but her parents have since brought their baby home. Homecare has cost the couple more than $10,000 in less than a month, costs covered by their savings, friends, family and members of their Eastern Ontario community of Lombardy.
“Our community can’t forever be dishing out money to keep us at home,” says Patterson, “there’s a huge gap in the government for families dealing with complex care needs like Everley.”
Everley’s parents have asked the south-east Community Care Access Centre (CCAC), based in Belleville, for funding to cover full-time nursing care, overnights and during the day, but for now the CCAC is only offering funding of 258-hours of homecare, the maximum set out by current legislation. CCAC CEO, Jacqueline Redmond, says they are working on helping Everley, but the organization has never had to fund such a long-term and complex case.
Conservative Leeds-Grenville MPP Steve Clarke has taken the family’s story to Queens Park, demanding the Ontario Health Minister secure funding, “Baby Everley belongs at home,” says Clarke, “What kind of Health-care system abandons parents with absolutely zero hours of home care for over a month while officials try to get their act together?”
Ontario Health Minister Eric Hoskins said in the Legislature, “we are working on this case and I commit to the family that we will do anything possible.”
Everley’s mom, Sarah, says time is precious, without the homecare Everley will be forced back to CHEO’s Intensive Care Unit, “we are dealing with life and death every single day and exceptions need to be made.”
