(Austin & Family - Christmas 2017)
Austin Terling passed away in July of 2022, at only 9 years old, from a neurodegenerative brain disease caused by a mutation in the UBA5 gene. We spent 4 years exhausting all efforts to find a diagnosis for our son.
Even through all the unknown we had a child with the most vibrant, uplifting spirit and a smile that was very well known!
While we have MANY cherished moments spent with him, family, and friends…it becomes harder to hold on to those moments as they became fewer and fewer.
Family gatherings shifted from getting out and all traveling together to holidays spent debating the risk over the reward. Austin had become bed bound as his seizures progressed and were more aggressive & frequent. We spent several holidays apart due to his declining condition but refusing to allow our youngest son to miss out on more precious memories.
The last Christmas we spent with Austin, was also spent with our entire family together at our home, rallied around him, for the first time EVER. You can’t tell me everything happens for a reason. While we knew his smile had faded, looking back at the pictures from that Christmas shows just how much we were losing our child.
(Austin & Family - Christmas 2021)
We found out in September of 2017 that Austin’s condition would shorten his lifespan. The most important question doctors couldn’t answer was, how long would he live?
Sometimes ignorance really is bliss.
You can research, talk to others, and continuously prepare yourself for the road you know you have ahead. However, what if there is very little research or aren’t many people that can speak to your specific situation? How do you prepare your family and friends for the road ahead?
- Lindsey Terling (Mother of Austin Terling)
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