Everley Yolkowskie is eight months old and already has personality plus. She is vibrant, expressive, and loves to laugh. Her outgoing personality is a testament to her loving parents Sarah and Jordan and to the around the clock care she receives at CHEO.
Born on January 14 Everley stopped breathing immediately after birth and within hours was transferred to CHEO. She has essentially lived at CHEO ever since. It’s been a stressful journey at times for this new family but they have shown strength in the face of adversity.
Everley has a rare condition called Congenital Central Hypoventilation Syndrome (CCHS). It affects approximately 1,000 people worldwide and currently has no cure. When she sleeps she stops breathing. In order to survive she requires the use of a ventilator at night, when she’s sick or even when she’s very tired. Everley needs 24 hour supervision. A simple car ride means a long checklist to ensure nothing is missed. Ventilator, extra batteries, oxygen monitor, suction machine and other essentials are needed in order to leave the house.
The majority of her eight months have been spent in CHEO’s Pediatric Intensive Care Unit. The staff have become like an extended family. “CHEO has touched us in ways we will never forget,” says mom Sarah. “Everley will need CHEO for the coming 18 years but with the staff by her side I feel we have hope.”
Everley’s condition comes with many worries for the family and just recently she was diagnosed with another rare disorder called glucagon malfunction. This causes her to have severe dips in her blood sugar levels. It’s another issue for Everley to fight but her parents are determined to not let these conditions limit her.
“This hospital has saved Eve’s life, and will continue to provide her with the care she needs to live a safe, healthy and normal life,” says Sarah. It’s that determination combined with the expertise at CHEO that will help Everley continue to smile brightly.
This hospital has saved Everley’s life, and will continue to provide her with the care she needs to live a safe, healthy and normal life,” says mom Sarah.Meet Everley and learn why her family is thankful to CHEO
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