Ace achieves the impossible

Ace is seven years old and he has done the impossible.

Ace has Aicardi-Goutieres syndrome a rare degenerative neurological condition which calcifies parts of his brain. This impacts his ability to control his movement and communicate verbally. But with the support of his family and with years of hard work, Ace has reached a very special milestone.

Ace Bartlett has just learned how to wave hello.

This might seem like an insignificant milestone to some, but for those that know and love Ace like we do, we know this is an incredible achievement.

For Ace to not only physically lift his hand to wave but also to have learned the right time to express the movement, is truly inspirational. It’s taken him 7 years to say “hello” to the people that he loves.

Nothing comes easy for Ace. He has to work harder at everything to achieve the things most of us take for granted. This has not been an easy journey for Ace, but you wouldn’t know it when you see his beaming smile and hear his cheeky giggle.

Ace is committed to working hard to make each moment matter.

The team at Very Special Kids is committed to helping the children and families in our care make the most of the moments they have left.

Ace’s condition has been diagnosed as terminal, but a lot about his condition is unknown.  There’s no way for Ace and his family to plan for the future, so they don’t. Instead they focus on living each day one moment at a time.

Community donations help fund crucial family support services, occupational therapies and respite for Ace and his family to survive their way through this unknown journey.

As Ace’s other younger siblings Atticus and Indigo, grow up and start to understand their own challenges of having a sibling with a life-threatening condition, Very Special Kids will also be there to ensure they have the support to find their way through.

A donation today ensures Very Special Kids can be there for the firsts, the lasts and all the moments in between.

After hearing Ace’s story, I tried to remember the first time my two girls waved at me for the first time. I realised, although I know they waved at me those moments were overshadowed by their first words, the first steps and all the other milestones we shared together as we watched them grow.

For the families in our care many of those milestones will never come. Their lives don’t follow a set timeline of milestones they can tick off as they grow up, instead their futures are unknown, and every day is a gift. That’s why for these families our support is not a luxury is a necessity to ensure they survive all the unknowns that life will give the.

Your support ensures that no child with a life- threatening illness is alone in the moments they need support the most.

All our support services are provided free-of-charge to the families we care for and are tailored to their unique needs. We don’t know when a family will need our services, but with your generosity today we can ensure we will be there when there’s no one else.

With your donation, we can be the constant amongst all the unknown.

Donate now