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one of us walked in the room, he would<br />
always smile. Austin had a connection with<br />
my dad (Pap Pap), and he would smile big at<br />
hearing the name Pap Pap or seeing him.<br />
“Austin dealt with these things every day<br />
24/7 for nine plus years all from the genetic<br />
condition he had,” his father says. “We have<br />
been part of studies. Lindsey and I have a<br />
chromosome of the UBA gene. We both<br />
passed a mutated UBA5 gene to Austin. He<br />
was born a beautiful child with challenges.<br />
“It was a miracle that Sullivan was already<br />
born since there is an 80 plus percent<br />
chance it could happen again. It was a God<br />
thing to say we found out the real diagnosis<br />
after Sullivan was born because we wanted<br />
more children but didn’t know it could have<br />
happened again.”<br />
During his hospital stay, Anthony opened<br />
a devotional book and read the verse for<br />
Austin’s birthday. The Bible verse was specific<br />
to what they were going through and<br />
still going through now. It was John 13:7.<br />
The last two years of Austin’s life at home<br />
were the hardest for him and his parents. He<br />
spent most of the time in a hospital bed.<br />
“We are thankful that it taught us a lot of<br />
things to be thankful about,” says Anthony,<br />
“and that small things matter. We would<br />
have continued the journey for 100 years if<br />
we could, except wishing Austin hadn’t had<br />
that challenge.<br />
“We know his suffering did not come<br />
without a story that we can tell to help<br />
people, and it helped us. I can’t tell you how<br />
many people have reached out that have<br />
been touched by Austin’s story. He made me<br />
a better person. I think that is the power of<br />
relating to people.”<br />
They write a blog once a month. “We want<br />
to carry on his legacy,” says Lindsey. “He was<br />
here for a reason. Seeing his life unfold in the<br />
last nine years, there were times we thought<br />
it was not fair, but people in our lives would<br />
remind us that it was alright. You can’t control<br />
it, but you can control your attitude and<br />
choose whether you smile or not.”<br />
Austin passed away July 16, 2022. At 9<br />
years of age, he was still like a two-monthold,<br />
and never sat up, crawled, walked or<br />
talked. He was on a liquid diet, being tube<br />
fed most of his life. Austin was always smiling<br />
through his situation and pain with joy<br />
for just being with his family.<br />
The beloved child’s legacy is being<br />
remembered and carried on in the Austin<br />
1st Foundation, “Champions for Rare<br />
Diseases,” and at Christmas with toys given<br />
to patients at Children’s Hospital in Austin’s<br />
1st Christmas.<br />
EAST ALABAMA LIVING 45
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