THE AUSTIN WAY

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At one point he was considered the 1st person to be reported with his particular genetic mutation within North America, with around 5sew320 other cases known in the world (more cases are being found). The small bit of research that we have been provided shows us just how lucky we are and just how much of a hero he is to so many. His attitude and determination is the reason he has the intellectual abilities he's acquired. He has defied all odds and he is our superhero.

From the time Austin was born, as his parents, we looked at him as a superhero. He was born with 2 dislocated hips and was in a body cast for 3 months when he was still a newborn. He has gone through countless hours of physical, occupational, speech, and feeding therapy. He has endured hours of car rides to Birmingham to visit specialists, routine procedures, and hospital stays.

In August of 2017, he had to be rushed to the hospital for a respiratory collapse, this was the second one he had been admitted for in about a month. He stayed at Children's of Alabama for close to 6 weeks. During this stay, he was on a ventilator for 4 weeks, and his doctors decided that a tracheotomy would be a necessary procedure for him to move forward in being released. His trach was placed and within a week he had gotten off of the ventilator. The most uplifting part of going through this entire scenario was watching Austin continue to smile through all the wires and tubes in his mouth and down his throat. We had been informed that if he couldn't make it off of the ventilator we would have very difficult decisions to make moving forward in his care. In the final genetic report, it revealed he has a mutation in the UBA5 gene which causes severe physical and cognitive disabilities.

We were told many times that Austin would chart his own path. At the time, we had no idea how true that would be.

An easy way to think about the UBA5 gene mutation is it functions as a spectrum. Some children can sit, walk with assistance, write, and feed themselves; while others have never been able to walk, sit, feed themselves, and are possibly restricted by several medical devices.

In six years we have seen Austin move across a spectrum in a physical aspect.

Although be progressed slowly he was able to prop sit, walk in a gait trainer, stand in a supine stander, attend school and therapy sessions, feed orally, and make the world's cutest noises. He can no longer sit up or support any of his weight or head, he is also bed-bound, utilizes a feeding pump, and requires humidified air due to his tracheostomy. 

#Austin1st  

#CareAboutRare

#UBA5

WHAT DOES THE AUSTIN WAY MEAN?

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

 

Austin 1st, that was the way Lindsey, myself, 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.”

 

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. 

Remember what Austin taught us….to LOVE big, to be a BRIGHT light, and you always have STRENGTH! 

 

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! Austin1st

TOUCHING LIVES THE AUSTIN WAY