Ben's story

First published on 6th March, 2017 by Emily Giudice

Our children come from all walks of life. They are somebody's brother, sister, son or daughter. They all have vastly different lives but they all share one thing in common. They are KidzWish Kidz. In this article, Ben's sister Emily shares their family story. 

I’d like to begin with Ben’s story to express why KidzWish has been so vital in providing opportunities for Ben to have come as far as he has today.

On the 19th of June, 2008, Ben was born. Unfortunately, he was inundated with hospital stays and medical procedures; a life no child should ever have to experience. Ben was diagnosed with Noonan’s syndrome, a genetic disorder that prevents normal development in various parts of the body.

This includes a short stature, unusual facial characteristics such as slanted eyes and low set ears, heart defects and other physical problems paired with potential developmental delays. This meant that growing up as what is considered ‘normal’ was not possible. That is where KidzWish intervened.

The biggest obstacle Ben faced as a child was having to become accustomed to a tracheostomy, an artificial device used to overcome breathing difficulties he was suffering from as a one year old. From this, he required what is called a ‘suction machine’ to remove any excess fluids in the trachey, which was absolutely essential. These machines are worth thousands each, and more than one is needed to make it easier and more portable. KidzWish knew this, and donated two of these machines to Ben.

I cannot begin to explain how much this influenced not only Ben’s life, but all of the lives in my family. It made outings so much easier as we didn’t have to rely on being near a powerpoint to ensure it was charged. We didn’t have to worry about if the machine being close, because thanks to KidzWish, we knew this was a reality. Ben had the trachey for 3 years, so this was truly a blessing.

Because of the trachey, Ben struggled with talking, and didn’t for quite a long time. From spending most of his toddler life in hospital, he was unable to develop skills to talk or walk.

Again, KidzWish came to lend a much needed hand. The need for Occupational Therapy and Speech Therapy arose when Ben’s hospital stays weren’t as common, and the time was nearing to be ready to start school. KidzWish accommodated for this at the KidzWish Place in Shell Cove, and the house became Ben’s second home during the time he attended there. The support KidzWish has provided has had a lasting effect on our family and Ben himself.

“I can say with confidence that this support has allowed for Ben’s development into the person he is today, both physically and mentally. He deserves all the opportunities in the world, from the moment of his diagnosis and far into his life as a growing child. KidzWish, I would like to say from the bottom of my heart, thank you for realising this in the same way my family and I have.”

— Emily Giudice

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