PARENTS AS RARE – EPISODE 080
Jireh Somera – Fabry Fighter
Jireh Somera is a husband, father and Fabry fighter. While our rare disease journeys have been different, we share a lot of similarities and it’s nice to have someone to relate to. In this episode, Jireh shares some of his journey with us, giving us insight into staying present, shifting perspective and trusting the road ahead, knowing that it’s not what he can’t do, but what he can do.
What was life like leading up to your diagnosis?
In 2020, my son was born and I was a new dad. I took the opportunity to work at home and embraced my time with him and my wife. My career was where I wanted it to be and we had just bought a home.
What were your first symptoms?
I didn’t know I had symptoms of Fabry disease– I just thought I had normal headaches or elevated blood pressure. I went to work with a headache, assuming it was allergies, had coffee, took a pain reliever and by the evening the headache came back. That night, I yelled in my sleep and my wife woke up to find me unresponsive. A CT scan revealed that I had a brain bleed, I was admitted to the ICU and a stint was implanted. Through that procedure, doctors discovered abnormal blood vessels in my neck, which triggered follow-up appointments, meeting with a geneticist and receiving a diagnosis.
What was your experience after being diagnosed when living up to your expectations as a dad and husband were so important to you before?
It was a struggle in the beginning and still presents opportunities for me to work on today. I put a lot of emphasis on what a good father and husband looks like and once I realized those were just my expectations and not who I needed to be, which helped have an overall change in mindset. My wife, family and friends also play a big role in my continued change of mindset.
How have you adapted the way you interact with your son?
Since he’s little, most activities we do are adaptable. With the mobility issues that resulted from my strokes, I have found ways to play, sitting in a chair so I don’t have to stand. I appreciate the family support we have with caring for my son. They help him with the things I can’t and I stay focused on what I can still do for him. Even though he’s two years old, it’s been helpful to be honest about the boundaries and what is and isn’t okay to do with me.
LINKS & RESOURCES MENTIONED
Rare Is Everywhere book by Deborah R. Katz
Fabry Support & Information Group
National Fabry Disease Foundation
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