Happy Birthday Evanna
"Welcome to our life." That was Kierra Irvine’s answer this morning when we asked how she’s coping with her kids at home in the global pandemic lockdown. “If anything, the world is getting a crash course into how we live almost every day."
Kierra’s daughter Evanna turned six today. She was born with DiGeorge Syndrome, a severe and critical heart condition that affects the 22nd chromosome.
“If she were to get another flu or cold, it could likely kill her,” Kierra said. “So everybody's reaction to Covid is how we react to everyday germs.”
Evanna is one of the students 4Seasons carries to school. When we heard it was her birthday we decorated a bus and rolled up to her house to wish the Irvine family well. Evanna’s dad Nick carried her outside. Her oxygen supply was piped into her lungs through a long clear tube that ran back through the front door.
“She's on the ventilator 24/7,” Kierra explained. “And she's on nine litres of oxygen, so that just kind of shows you how extreme things are right now.”
The stresses on Evanna’s little body make it difficult for her to enjoy life the way other kids do. At six, Evanna is the same size as her two-year-old brother Bennett. The energetic lad immediately hopped in the driver’s seat and pushed the switch to close the passenger door.“ He used to love watching the bus pick up Evanna,” said Kierra. But those days are likely over now. Kierra doesn’t think Evanna will be well enough to go back to school when the COVD-19 threat passes. But meanwhile, the family is cherishing every day they can be together.
“This social distancing birthday is actually literally her cup of tea,” Kierra said. “She's very much of a homebody, a little bit of an introvert, and later we’ll take her for a walk in her nice little special wagon.” Evanna has been through a series of intensive medical treatments but doctors now say there’s nothing more they can do.“
Last year, she spent her fifth birthday in the cardiac ICU down in California at Stanford. But we've run out of medical options,” Kierra said. “This unfortunately could be our last birthday with her.”
Happy Birthday Evanna.