Signs & Symptoms
At 5 months Chase began being unable to feed, hold his head up on his own, or lift his arms and legs up. He was short of breath, and unable to cry or babble. He was losing weight, had an enlarged heart, fluid in his lungs, enlarged liver, extremely high CK levels and was just generally very unwell.
Just before Chase was six months we brought him to the emergency room with a bad cough. We were sent home being told it was bronchitis. The next day he had gotten much worse so we took him back. The doctor on call did a chest X-ray and ECG. We found that Chase had fluid in his lungs and a very enlarged heart. We were sent to B.C. Children’s hospital that evening on medivac. Chase was immediately rushed into PICU as the stress of the flight was putting him into cardiac arrest. They got him stable and were able to have doctors come and examine him. The cardiologist came to speak with us and told us that they weren’t positive what it was, but they knew it wasn’t good and said she believed it was a rare disease called infantile Pompe disease. They did a muscle biopsy and we got confirmation 24 hours later that it was in fact infantile Pompe. Unfortunately, Chase was unable to receive treatment due to having RSV and another bacterial infection. He took a turn for the worse the next morning and they told us that he didn’t have much longer so we should be prepared to say our goodbyes. Chase passed away that evening on May 15, 2016 just after midnight and was surrounded by myself, his father and his grandma Tina. Chase was a kind and gentle soul who made a positive impact on every person’s life he crossed.
Symptoms started at 5 months
Diagnosed at 6 months
God saw you getting tired, and a cure was not to be. So he wrapped his arms around you, and whispered “come to me”
Tagged: Awareness, Int’l Pompe Day, portraits