Ace Bartlett continues to defy the odds

Rowville boy Ace Bartlett will soon be able to ride a new bike around school, thanks to the efforts of his uncle Daniel Hopper. Ace has Aicardi-Goutieres syndrome, a genetic condition that has calcified part of his brain, but he continues to defy the odds.

Rowville's Ace Bartlett, 7, with his uncle Daniel Hopper, who is running in the Melbourne Marathon to raise money for Ace to have a new bike. Picture: Ellen Smith

Rowville boy Ace Bartlett continues to defy the odds.

The popular Park Ridge Primary Grade 1 student has Aicardi-Goutieres syndrome, a genetic condition that has calcified part of his brain, particularly the part that controls his movement.

Ace, 7, uses a wheelchair and is non-verbal but has begun using a voice output device, which speaks messages for him.

And thanks to the efforts of his uncle Daniel Hopper, Ace will soon have a new modified bike to ride around school.

Daniel is taking part in the Melbourne Marathon on October 13 to raise money for the bike and other equipment for Ace to use around the house.

Rowville's Ace Bartlett, 7, with his uncle Dan Hopper at Park Ridge Primary School in Rowville. Picture: Ellen Smith

Ace’s mum Bianca Bartlett said she was so chuffed with Daniel’s efforts.

“I was so happy that he thought of linking Ace into a dream of his (running a marathon) and supporting his nephew in a way that benefits both of them,” Mrs Bartlett said.

“He gets to fulfil his dream and Ace get to fulfil his dream of riding his bike at school.”

The three-wheel bike will cost about $2200 and will have a back rest, hip and chest strap, as well as a pole on the back to help Ace steer.

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Mrs Bartlett said since starting school last year, Ace had made incredible progress.

“He is engaged, he uses a voice output device now … he is included with his peers, he gets invited to birthday parties, he is just one of the gang.

“His aid and his teacher are just out of this world.

“The staff at the school are the stuff that parents of children with additional needs dream about.”

Mrs Bartlett said Ace’s condition was degenerative and he was supposed to be getting worse.

“But he is not, he’s defying the odds and getting better and learning new things every day,” she said.

“Since starting school he’s a completely different child.”

To support Daniel go to gofundme.com/f/race-for-ace-melbourne-marathon

RACE FOR ACE

By Daniel Hopper

Running a marathon has always been a personal dream of mine, however as with many dreams, life gets in the way and we put these dreams to one side.

In 2019, I decided not to play another season of soccer, which meant I had more time, needed to maintain my physical fitness and most of all didn’t have the excuses I had previously in regards to fulfilling my dream of running a marathon.

In my decision to run the Melbourne Marathon, I not only wanted to fulfil a dream of my own, but to raise money and support a special boy close to my heart. Ace is my nephew and I have been able to witness first-hand the challenges Ace and his family face on a daily basis.

Sometimes we feel so helpless when we are faced with disability and this is one way I can support Ace.

The cost of Ace’s equipment, modifications to his house/car are big expenses which the majority of us would never consider.

To provide Ace with the ability to ride a bike (like any other kid) is what my fundraising target is aimed towards. As I have now exceeded my initial fundraising goal I now want to assist in helping the family with further house modifications and equipment.

Thinking about the challenges Ace faces and his never ending determination will get me through the 42 kms on 13 October -plus all the support from sponsors — I won’t let them down.