Dx Intraventricular Hemorrhage & Tetrasomy 12p: Austin’s Success Story

Brave Heart

The Story of Austin


Mr. Personality right from the start – baby Austin with his Dad

Austin was born at 25 weeks, weighing less than one kilogram, just two pounds. He had suffered intraventricular hemorrhaging in both hemispheres, and immediately was taken to intensive care. Soon, genetic testing revealed Tetrasomy 12p, Pallister Killian Syndrome.

We were told do not expect much.

Austin’s second mother his adoring older sister

Austin’s development was very slow, his Mother writes: “As Austin grew he did not hit milestones as expected. He did start to roll over at 5 months old, but that was it for his progression in mobility. We also noticed he would not reach for anything and seemed to not see much of anything… Unfortunately, we were also told by one doctor not to expect much with his development due to the diagnosis of the Pallister Killian Syndrome.”

We needed a new route

“But that was just something I knew not to be true. I watched my son fight for his life in the NICU for 140 days. There were many days doctors and nurses did not know if he would make it to the end of the day. Yet, he did. I knew I needed to find another route for my son to give him the opportunity to grow.”

“I was heart-broken to know that there was a good chance his life would continue to be hard. He fought so much to live and now he had to continue to fight to live. I was also heart-broken that a handful of people didn’t believe in him and what he could potentially accomplish. I was very determined to give him every opportunity to be who he is meant to be.”

Just after Austin’s first birthday, Mother attended the What to Do About Your Brain-injured Child course, soon to be followed by Dad, and Grandfather.

An intensive program begins

By this time, Austin had been diagnosed as cortically blind, with limited hearing, and cardiac and kidney problems. He was unable to move or use his hands. Austin’s parents, his older sister and his Grandfather were determined to make a difference in his life. They began a full intensive treatment program.

Austin begins to see

One of the first things was to provide visual stimulation

By age two, his family already began to see very significant improvement. Austin was beginning to see, he was enjoying listening to Bible stories, and had begun using his hands to drink from a bottle.

A year later he was reading a beginner’s Bible and said his first words.

Now he is talking, crawling, and reading above age level.

After two years of immobility, Austin begins to do the impossible – move.

Today, Austin is five years old, and is well above average in reading and mathematics, he enjoys classical music, and has written his first book “A Place of Hope”. He is talking, crawling, and beginning to get up to creep, and he has been in perfect health for more than a year.

Austin was always bright but learning to read helps him expand his horizons rapidly.

Mother’s advice to other parents, “You know your child better than anyone. Whatever you are told does not have to be your truth or your child’s truth. Think for yourself and know that there are people, like the people at The Institutes, that are more than willing to help.”

A mixture of prose and poetry “A Place of Hope” is Austin’s first book but not his last.

“You are not alone, and yes, your child is capable of so much. It will take time, and it will take determination from you and your child. Know, if you continue and just keep seeing the finish line, no matter how far off, you can succeed.

Remember to be gentle with yourself and also take time for you. Go into every day with a plan, but not an expectation. If the plan goes in a different direction, that is ok. Tomorrow will be a new day and will bring new joys as long as the tiny baby steps are noticed and celebrated.

You and your child are more than capable of achieving greatness.”

About The Future

Austin’s secrets: Hope, faith, determination, love, joy

 “I know Austin’s future is bright. I know he will be much better off than ‘predicted.’ He will help others in the process.

My entire family sees a future in helping others. We would not have been that way, if not for Austin. It truly has been a blessing to see the world in a completely different way.”

How to succeed at what most think is impossible?

“What we have learned is a pathway to our future as a family. Austin is the reason for that. He has shown us how to have hope, faith, determination, love, joy, and using all of that to succeed at what most think is impossible.

He is a beautiful boy with a huge heart and I look forward to him being able to show and share that with the world.

In this family there is enough glory for everyone.

When a child graduates from our program it is always a source of great joy for everyone. But for the staff, sometimes the greatest joy of all joys comes from seeing a tiny child who had everything stacked against him, and almost everyone predicting he would spend his short life immobile, wrapped in blankets, in a chair – begin to crawl – to go from paralyzed to mobile, from totally dependent to the beginning of independence, from trapped to free.

This is that boy.

Well, done Austin it is just the beginning but we are betting on you.

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