Additional Needs

In Honour of the Superhumans

Posted by Carolyn Voisey on 25th April 2018 Additional Needs, Advice & Support, Disabilities

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I’m talking about the remarkable, inspirational and tough-as-nails kids who live with life-limiting, life-changing and life-threatening issues.

I count my boy as one such superhuman; warned at 6 months of age that our boy would never interact, communicate, or have any quality of life, Sam evidently heard this and decided to show precisely what he was capable of.

And he isn’t the only one.

Several years ago, we met an amazing lady whose little boy, Ayden, had just been diagnosed with catastrophic epilepsy; the same rare but devastating form that Sam had suffered during his first year of life. Together with another amazing little superman, Harry, these three boys set out to show the world exactly what they were made of.

Harry decided that enough was enough, and at the tender age of three passed away surrounded by his loving family, and the world felt less bright for his passing.

It was also becoming apparent that little Ayden was fighting much bigger demons than anyone of us had realised; he was losing the battle.

His brave parents have accepted this and do everything within their power to keep him at home, safe, comfortable and happy.

Many, many times in the last 18 months his family have been gently told to gather family to say goodbye.

And every time, Ayden kicked the Grim Reaper in the shins.

I swear to you; this child was forged out of titanium.

Earlier this year we were guests at a very special event – Ayden’s 4th birthday party.

This remarkable little boy not only made it to this landmark date but was awake throughout the majority of his party!

Move over Robert Downey Jr. - Ayden is the real ironman.

I hadn’t planned on ending this post like this, but two days ago my heart cracked straight through once again, as Ayden finally stopped fighting.

The fight this little boy demonstrated is superhuman, his strength was formidable.

We all know that even superhumans have to hang up their outfits and rest, but without Sam and Ayden our families would never have met, and we wouldn’t now have them as friends for life.

My heart hurts for them and I will miss this little guy terribly.