Show notes
Season Three, Episode 2: What Would You Do To Save Your Child’s Life?
In today’s episode, I struggle not to cry – because tears would do Jordan Ogman very little good. And my tears would probably be even less helpful to David Ogman, my current guest, new friend, and Jordan’s father.
To understand this episode I think it helps if I explain how I connected with David: A few weeks ago I posted on my Facebook feed, asking if anyone had a story to share about living their best life during the pandemic. Or something along those lines.
You see, as much as I bitch and complain about remote learning and never having a free moment to myself, the truth is that I have gotten to spend more time with my ten and twelve-year old children – who, yeah, are sometimes huge pains in the ass – than I would ever have spent otherwise.
I have had the opportunity to complete my 200 hour teacher training, I have made some incredible friends on the other end of the universe, and I have managed to purchase more snarky shirts with funny phrases on them than I would have ever thought possible.
But, I have also had a lot of bad, crappy, garbage-y days.
So many of us discuss the bad, the isolation, the loneliness, the dear-god-what-I-wouldn’t-give-for-a-year-with-a-lot-less-excitement – it made me wonder, who out there is winning right now. Someone, somewhere, deserves to have a win.
David’s answer shocked the sh@# out of me.
David’s son, Jordan, is currently five years old. But, will he make it to age six?
After a normal pregnancy and a slightly difficult birth that resulted in a week at the NICU, Jordan’s first year of life went…normally. But shortly after Jordan’s first birthday it became clear that there was a developmental delay that no one could fully diagnose.
That’s because the disease that Jordan had been born with, TECPR2, was so new, and so rare, that the Jewish Genetic Screening that most Jews of Ashkanazi descent decide to undergo, had yet to develop a way to identify TECPR2 until a year after Jordan was born.
The good news is, Jordan’s smile, charisma, and devotion to the Florida Gators managed to win over the heart of a researcher at Shands Hospital in Gainesville, Florida.
But research takes time. And money. And the pandemic – although it has been an economic blow for so many, has also given David a platform to raise awareness about Jordan’s condition. And more awareness means the potential to raise more money.
To find our more about Jordan, or to donate money to Shand’s Hospital’s Research on TECPR2, visit www.savingjordan.org
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