“I misunderstood the first time my wife told me about our son’s genetic disorder, Neurofibromatosis Type 1 (NF1).
Currently, he wears a brace to protect his leg, a side effect of the disorder. If it breaks, it doesn’t heal normally and he would need surgery.
We then found out he had very high blood pressure in May 2019, about 6 months after his diagnosis of NF. He currently takes 3 blood pressure meds to control it.
Some other common side effects include tumors that grow on nerve endings and learning difficulties. He recently had an MRI, Echocardiogram, and Ultrasound. We found out his left kidney isn’t doing great and still waiting results on an MRI.
I’m worried about his health and all the unknowns that go with NF1. There’s no cure (yet) but we have an amazing community and my faith keeps me strong. I’m lucky to currently be a stay-at-home dad to this dude.”
– Devin Stevens
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