Ethan’s journey with the Alberta Children’s Hospital began 15 years ago after he was born in Saskatchewan with extensive swelling to the entire right side of his face, so much so that his right eye was swollen shut. Doctors there believed he had a rare, life-threatening syndrome affecting his brain and wouldn’t make it past his second birthday. Heartbroken, Brandy and Darcy were referred to specialists at the Alberta Children’s Hospital – then located on Richmond Road – when he was two weeks old … and are so glad they were!
Dr. McPhalen at the hospital’s Vascular Birthmark Clinic determined Ethan’s swollen face was actually due to a lymphatic malformation – a rare, non-malignant mass consisting of fluid-filled channels or spaces thought to be caused by the abnormal development of the lymphatic system. They were admitted and were seen by Dr. Astle with the Vision clinic who wanted to open his eye because if they waited too long, his brain would learn to shut its function down completely. When he was 7 ½ weeks old, Ethan had surgery to remove part of the malformation and open up his eye. “It was the first time we saw his beautiful little blue eye looking back at us,” Brandi recalls. However, as Ethan grew, so too did his malformation, requiring more surgery to try to keep his eye open and strong. Ethan was excited about sleepovers at the hospital because the doctors and nurses were so good to him, and he looked forward to future stays at the new hospital.
When Ethan was six, the malformation developed behind his eye, requiring the tough decision to remove the eye when nothing more could be done. Brandi and Darcy couldn’t help but worry what Ethan’s future would be like. Would he be teased for his appearance? Still, they didn’t lose hope. Even while Ethan went through school being teased and even bullied, and suffered from headaches and troubles eating because of the swelling, his family kept faith and trust in their doctors who told them to stay hopeful because medical advancements were being made every day. Thanks to that support, the family stayed positive and it turned out, their doctors were right … when Ethan was 13, Dr. Kendrick with the Vascular Birthmark Clinic called to say a new treatment had become available! Soon after starting this new medication, his swelling went down, his headaches diminished, and his self-confidence improved significantly! What’s more is thanks to the new treatment, he could finally crack a straight smile JEthan has now been off his meds/treatment for almost a year now.
Ethan’s family are so grateful for the Alberta Children’s Hospital and the doctors who have supported them along his journey. They don’t know where they would be without the hospital, or the donors who support it! Ethan himself has raised $3000!
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