Anecdotes From a Rare Disease Dad of an Adult Son with NR4A2 with Joe Henry
ONCE UPON A GENE – EPISODE 195
Anecdotes From a Rare Disease Dad of an Adult Son with NR4A2 with Joe Henry
Joe Henry is a rad dadvocate of an adult son with NR4A2 and he’s been around the block a time or two, here to share reflections and stories from his journey, spreading hope to all the parents who feel hopelessness.
EPISODE HIGHLIGHTS
Can you share about your son and diagnosis journey?
My wife and I had some fertility issues and finally had our son Franklin. When he wasn’t meeting any of his milestones, we started down the diagnostic path, seeing a neurologist, getting an MRI and limited genetic testing to the extent that it was available 27 years ago. Franklin was diagnosed with Pervasive Developmental Disorder (PDD), which today falls under the umbrella of autism. More recently, we had additional genetic testing done and results revealed my son has NR4A2 related syndrome.
What motivated you to have additional genetic testing done after so long and what did that change for you?
There’s an old Russian proverb that says “trust, but verify” and I have always been the type of person who prefers to go to the source to verify and not go by what someone tells me. Over the years, I’ve read many books that have helped me to navigate where I’m going. When I first got the diagnosis, I couldn’t focus on anything else and with time I learned more and more. Now that I have an accurate diagnosis and better understanding, I can reflect back on his struggles and better understand the reasons why those things happened.
In your opinion, what should parents focus less energy on and refocus elsewhere that you’ve found valuable on your own journey?
I’d say to quit worrying about the future. Live for the moment. Love your partner and don’t stress the little things because everything will work out. The future might get better, it might get worse, but either way, our experiences make us better people. Personally, I’m more compassionate than I used to be due to the trials and tribulations with my son. Things that happen to us, happen for facets we wouldn’t think and can help us be better.
LINKS & RESOURCES MENTIONED
https://www.simonssearchlight.org/
https://www.templegrandin.com/templegrandinbooks.html
Autism: Explaining the Enigma by Uta Frith
https://www.amazon.com/Autism-Explaining-Enigma-Uta-Frith/dp/0631229019
https://www.oliversacks.com/books-by-oliver-sacks/
https://www.amazon.com/Real-Anthony-Fauci-Democracy-Childrens/dp/1510766804
https://www.amazon.com/Genetics-Dummies-Tara-Rodden-Robinson/dp/0470551747
Going Down the Steps with a Gun in his Hands
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