Oliver “Olie” Moore


On Tuesday July 18th I received word that the young child of an old squadron mate of mine had perished. Oliver, known more appropriately as Olie, was born with two rare genetic conditions Phelan-McDermid Syndrome (22q13 deletion) and a partial Trisomy 9 (9q34 duplication).  He is one of only two children in the world with this extremely rare combination of genetic disorders and is one of the 1,100 known worldwide cases of Phelan-McDermid Syndrome. He also possessed Acute Lymphoblastic Leukemia (ALL), and had been undergoing treatment for quite some time.

The Leukemia required chemotherapy and many clinic appointments, inpatient hospital stays and unfortunately many unexpected emergency room visits. Based on the medical evidence (which obviously does not apply to every case), Olie would not have long to live, as his body was not responding well to the treatments.

Due to my lack of being on Facebook, I did not know much about Olie’s journey until the middle of last year, and it was not until the earlier part of this year that my friend Adam connected me with Olie’s father Chris, as the family was starting a fundraiser.

On the 16th of July the decision was made to cease treatment for Olie as it began to be futile. He was no longer getting better, and there was no longer a reason for the child to suffer. Family gathered together and then during the early morning hours of the 18th of July, Olie would close his eyes and go to sleep for one last time. I would find out a few hours later, and upon receiving the information I sent Olie’s father Chris a brief text message (I would have rather called, but I knew a short text would be less intrusive for the family during this time) with my condolences. What I received in return is my reason for sharing this blog today:

“Thanks Jason. I’ll miss him dearly, but I’m very thankful his suffering is done. SERVING HIM HAS BEEN THE MOST REWARDING EXPERIENCE OF MY LIFE.”

I think the last part of Chris’s words deserve repeating:


That is what life is all about. Moments like these really make you think about all of the silly things you fear, worry about, and lose sleep over.

If you feel that your ability to serve others is lacking, I challenge you to change something in your life this weekend, or at least starting on Monday of next week.

Wishing you the best as you continue on with your own PROCESS.

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