/To us it was priceless: Parents joy as boy with rare neurological condition waves for Mothers Day

To us it was priceless: Parents joy as boy with rare neurological condition waves for Mothers Day

Posted

May 10, 2019 16:32:36

Seven-year-old Melbourne boy Ace Bartlett’s family was told their son might not live past his 10th birthday.

Key points:

  • Only 120 people worldwide have Aicardi-Goutieres syndrome
  • The disorder is calcifying part of Ace Barlett’s brain, including the part which controls his movement
  • The condition is degenerative but his family is thrilled their son has gained a new skill

While he will never walk or talk, that hasn’t stopped him achieving what doctors thought was impossible and giving his mother a special gift as Mother’s Day approaches.

Ace has a degenerative condition so rare, it affects just 120 people in the world.

The disorder calcifies parts of his brain, including the part which controls his movement.

But he has defied the odds to physically lift his hand and wave hello to his devoted mother, Bianca.

“To other people it might seem like an insignificant moment, but to us it was priceless,” she said.

“We’ve missed out on seeing Ace do so many things, but to see him waving means so much to us.”

She said it has been the result of years of hard work.

“To have this socially acceptable, physical response to people has just opened so many doors to him.”

“We want him to be included and accepted and this is another step closer to that.”

Ace was diagnosed with Aicardi-Goutieres syndrome when he was eight months old, after his parents noticed he was not reaching milestones.

Gaining skills despite the odds

The mother-of-three said her eldest son has the intellectual capacity of a seven-year-old but requires full-time care.

“You go through the newborn stage with a baby, then babies gain their independence but unfortunately Ace hasn’t gained his independence.

“It’s like we have a seven-year-old new-born baby in our house.

“Because Ace’s condition is degenerative, he’s supposed to be losing skills, so he’s defying the odds by gaining skills and we’re pretty proud of him.”

Paula Mullin is the Deputy Manager of Very Special Kids Hospice, which helps look after Ace a few times a year, to give his parents a break.

“It’s a massive, massive achievement for Ace to wave,” she said.

“He’s been coming to us for quite a few years and just to see that come to light is just amazing for us.”

“He just proves that if you work hard on it and you keep that hope there, you will be able to achieve something.”

Topics:

genetic-disorders,

diseases-and-disorders,

brain-and-nervous-system,

parenting,

family,

disabilities,

melbourne-3000,

rowville-3178,

malvern-3144