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Seven-year-old Ellie is a free-spirited kid who loves school, playing dress up and reading. In so many ways, Ellie is just like other kids her age, but she lives with an extremely rare disease called trichohepatoenteric syndrome. The condition affects the hair, liver, and intestines, as well as other tissues and organs. Ellie's is the only known case of the syndrome in Canada. She depends on a gastrostomy tube (also known as a G-tube) that delivers nutrition directly to her stomach. Her condition impacts her daily life and has meant that her childhood is filled with medical appointments, procedures and pain that no child should have to endure.
A few years ago, Ellie's mom Shari reached out to a mother of another child living with this rare condition. Ellie became long-distance best friends with Brynne, a 6-year-old girl living in Texas. Both moms kept in touch through email and social media, sending messages back and forth for their daughters. They became each other’s support system – together, they coped with the obstacles the girls' illness often brings. When it was time for Ellie and Brynne to choose their one true wish – without either one knowing, they both asked for the chance to finally meet in person.
Ellie was surprised with a Skype call from Brynne announcing that their wish was coming true very soon. Both families travelled to Destin, Florida for a joint family vacation. At the airport arrivals gate, Ellie was ecstatic upon spotting Brynne and ran towards her for a hug. During their visit, Ellie and Brynne spent their days playing on the beach together. They even had a sand castle building expert help them create an incredible sand castle of their own. Their families enjoyed a much needed vacation after the challenges and uncertainties they've faced in dealing with the girls' health issues.
Shari says that both families shed a lot of tears of joy at the beginning of their trip and many more when it was time to part ways. The bond between Ellie and Brynne is truly enriching their lives and they hope their friendship will continue to grow.
Special thanks to our partner, TuGo, for supporting Ellie's wish. This wish was granted with help from three Make-A-Wish affiliates: Make-A-Wish Eastern Ontario, Make-A-Wish North Texas and Make-A-Wish Central and Northern Florida.