Rare Disease - @this.little.heart.of.mine

“Ella Waldner is a 2 year old girl from Manitoba, Canada. Ella loves to play, get into mischief, practice her independence, and she especially loves going outside for wagon rides around town to enjoy the fresh air, sights, and sounds. Ella absolutely loves life! Ella has a rare genetic condition called Kabuki Syndrome that caused only half her heart to develop. This resulted in a 6 month stay in a Edmonton’s Stollery Children’s Hospital immediately after birth, undergoing two major open heart surgeries (her first at 8 days old, and her second at 4.5 months old). Ella nearly lost her life on more than one occasion, but fought her way home. She came home on oxygen and tube feedings, and through a lot of hard work, patience, and perseverance she is now accessory free, and enjoying her freedom from it. We are uncertain if or when Ella’s next open heart surgery may be, but she is closely followed by her cardiology team in Winnipeg. Kabuki Syndrome has played a role in Ella’s development. She is working very hard to learn new skills everyday, including her most recent accomplishment of bum scooting around our house. Ella attends private therapy called ABM (Anat Baniel Method) that targets brain connectivity. She participates in intensive lessons every 6-8 weeks that last 4 days. We have seen tremendous progress through it, and are excited to see where ABM therapy will take Ella. Kabuki Syndrome is rare, but the community created from it is strong! We have so many lovely families who we have met through Kabuki Syndrome, and we all support and care for one another.” @this.little.heart.of.mine

Back to blog

Leave a comment