Ella is a 1.5 year old little girl from Rivers, MB. Ella has a rare genetic condition known as Kabuki Syndrome. Kabuki Syndrome affects 1 in 32,000 individuals globally, and affects each person differently. In Ella’s case she was born with a critical congenital heart defect where the left half of her heart did not develop as it should. Hypoplastic Left Heart Syndrome has no cure, and is a fatal heart defect if not surgically treated.
When Ella was 12 hours old she was life-flighted to Edmonton’s Stollery Children’s Hospital where she underwent her first open heart surgery at 8 days old. Due to complications after surgery Ella was placed on ECMO, a life support machine, for 2.5 days and experienced mini strokes. Ella also developed an infection from having her skin and chest open for 11 days while recovering from her heart surgery. Ella battled infections, arrhythmias, and developed Pulmonary Hypertension which required high respiratory support for months post surgery. Because of all this, Ella remained inpatient in Edmonton until her second open heart surgery at 4.5 months old.
Ella’s second open heart surgery went much smoother, and she was able to come home for the first time at 6 months old on 24/7 oxygen and tube feeds. After 4 months being home Ella was able to wean from her oxygen, and a few months after that, Ella was weaned from her feeding tube by hiring a weaning company from the U.S.A, Growing Independent Eaters. Ella enjoyed her first days as an oral eater shortly after turning 1.
Along Ella’s journey we have discovered other underlying medical conditions aside from her heart, caused by Kabuki Syndrome. Some conditions Ella also warriors are seizures, kidney disease, and hip dysplasia.
Ella sees many specialists and therapies, and often times this means overnight stays in Winnipeg and missed work. The money raised will help offset these costs, as well as help cover the multiple medications Ella takes daily. Her Pulmonary Hypertension and seizure meds in particular are quite expensive, and cost more than a few hundred dollars each month.
Despite Ella’s medical complexities, she loves life and is becoming a bright little girl. She works hard on her physical therapy and enjoys intentional play with her parents. Ella’s parents work hard on giving her a good quality of life, and strive to give her the opportunities she needs to continue to strengthen and grow.