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Austin Forever - Celebration of Life

Austin may have lived a short life, but he sure left a beautiful imprint on our lives and warmed the hearts of any person who knew his story.



We started this foundation to share the positive and sometimes deep impact Austin made on our lives and others around him. We want to use his light to help families going through rare disease battles or other medical hardships.

Through this blog we will tell the story of Austin's rare disease journey and how he impacted his parents, other family members and friends in different, but positive ways. We will invite guest bloggers to tell a story or two about how Austin touched their lives for the better.

If you have story to tell, we want to feature it here! Contact us at

We will share real and detailed stories of Austin's life, we promise you we will not hold anything back. We will share the details and emotions that most people only know with true experience of being a medical caregiver or going through a rare disease journey yourself.



Austin passed away in July of 2022 and these were the words spoken by his father (Anthony) at his celebration of life.


These were words that were used to describe Austin. However, one word will always describe Austin and his impact on this earth……


By Definition, is “not occurring very often.”

Ironically, the example usually given for rare is "a rare genetic disorder"

Another description for rare is “unusually good or remarkable.” OR EXCEPTIONAL.

That is what Austin was through every fiber of his little body.

He was an exceptional human being who never spoke a word nor took a single step by himself.

He was a rare angel with us on this earth for 9 years, given to Lindsey and me to make an exceptional impact on us, his family, friends, the countless people who cared for him, or those who just knew about his story.

Austin was the brightest light in a world of darkness.

His smile brightened our bad days and reminded us that everything is lovely and will be alright, as my late Father-In-Law used to tell us.

Even when his smile and unforgettable laugh dwindled away during his last years of life, his bright blue eyes and occasional squeeze of your hand would give you that gentle reminder.

We can tell many stories about members in our community we did not know approaching us in stores or reaching out to say how Austin had positively impacted them or their children. We have had people from different countries contact us about Austin’s story. Even Auburn athletes were touched by his spirit.

Our support system is everything to us, we are forever grateful to every one of you. Austin’s medical journey was unique. As one doctor told us, Austin charts his on course, no one else has been down his road. Doctors, nurses, therapists, teachers, case workers, school, and home nurses, some of which we became awfully close with, we thank you for the love and care you provided.

God, please forgive us now! Momma and Papa bear could be fierce if they were not at their best for our ‘little man’. Shhhh, especially his sparkplug of a momma.

He was our UBA5 warrior who gave more to others than anyone could ever give to him. We gave him all we had and more!


Family & Friends....

We have seen our family sacrifice and support us and Austin in so many ways; giving up many family vacations together, adapting constantly to Austin’s needs, traveling for medical and therapy appointments or hospital stays, sitting with Austin during his hospital admissions, and in the later years doing whatever it took to see Austin in his bedroom.

"We will never forget those big ‘PapPap’ smiles you gave or the versions of 'itsy-bitsy spider you made Mimi sing for many years."

To mine and Lindsey’s closest friends, we cannot thank you enough for your love and support.

As two of my best friends remind me from time to time, parenting children with special needs is not for the weak and Austin was the 1st of many things for a lot of people.


Strength….The Austin Way

he showed us the true meaning of how to be strong.

Austin 1st, which was the way Lindsey, me, Sullivan, and everyone else who was part of Austin’s life had to live. It was the only way and the Austin Way, as we say.

Even though he was one of the 1st to be diagnosed with his ultra-rare genetic condition, known as UBA5 Mutation, Austin 1st always stood for the way in which life revolved around a child who needed unconditional love and 24/7 care. Putting selfish needs aside and finding every ounce of strength you had to give to care for him. Our faith and strong wills kept us going in our darkest hours.

Through these 9 years we would get gentle reminders of the man above working his power through our son. As I sat in the hospital during the longest stay Austin ever had, I read the following bible verse that was the daily devotional for June 27th, Austin’s birthday.

John 13:7 Jesus replied, “You do not realize now what I am doing, but later you will understand.”

The amount of love and support shown for Austin and our family has been truly overwhelming but is telling us as a family, things we already knew.

Austin reminds us that even though he is gone from his earthly body, he can still give to others and make the Austin 1st impact he made on so many during his 9 short years of life. Thank you, Lord!

Austin’s cousins who were impacted in different ways by Austin, some are old enough to remember Austin during his brighter days and the younger ones only knew Austin during his more challenging days. However, each one of them has been and will be impacted by Austin’s life and legacy. Each one is wearing a special bracelet with a special message.

That message reads….

Wear this bracelet to remind you that there is always an angel with you cheering you on in life! Remember what Austin taught us….to LOVE big, to be a BRIGHT light, and you always have STRENGTH! Austin1st


From Your Mom & Dad.....

Life without you will never be the same, it has left a hole that will never be filled, but we must sometimes admit that angels are needed back in heaven, after gracing the earth with their presence, and Anthony Austin Terling Jr. was that example.

We sometimes hide our tears when we say your name, but the pain in our hearts is still the same. Although we smile and seem carefree, there is no one who will miss you more than your Mom and I.

Austin, the only thing you never had here on earth was wings, you have them now, bubba. God bless you, our sweet Austin.”

''My precious boy, we will miss you forever and cannot wait for the day when we can be together again to laugh, share, hold each other and say I love you.''

Let’s all be a better human today and the next day and remember the Austin Way. Smile ‘Big’ in the face of adversity and be the brightest shining light to others!

Austin, we love you!


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