What My Son’s Misdiagnosis Taught Our Family

The day Ezekiel was born, the neonatologist warned us he probably wouldn’t come out breathing. We were going to see him and say goodbye. But to everyone’s surprise, he took his first breath.

His initial diagnosis, based on his brain MRIs before and after he was born, was the severest form of muscular dystrophy. For the past year, we have been on an online forum with parents, especially moms, and have mourned with them the loss of their children who have this diagnosis. We have had this dark cloud over our thoughts for a year and have thought each day that Ezekiel’s life may be his last.

We recently discovered that he was misdiagnosed. We went to a NIH pediatric neurologist who is an expert in different disorders. We also had blood testing done and found the answer. Ezekiel doesn’t even muscular dystrophy. He does have brain issues, but his muscles are normal. The doctor explained that his brain doesn’t send correct information to his muscles on what to do. He also most likely won’t have breathing problems, according to this doctor. We asked the NIH specialist what his life span would be and he said he doesn’t know, but it could be a much longer time than what we had thought for this past year.

trin p ezekiel the mighty

Ezekiel has taught us so much over the past year. If we didn’t experience his birth and life, we wouldn’t have learned to value the frailty, and miracles, of life. We now see suffering people and children much differently… with a truer compassion and empathy. Things that used to concern us are not very worrisome anymore. Much anxiety and fear have left us because we let go of the control we never had in the first place.

If we heard this news 10 months ago, any news would be devastating. This has brought us a new peace. We know he may not live many many years, but we believe that God allowing us more time with him is such a blessing. It may not be a smooth journey, but we believe it’s what God planned for us and we are privileged to walk this path, with his help.

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