Gunnedah preschooler Ava Mizzi suffers from a rare genetic condition, and Li’l Achievers is showing support with a fundraising art show this Friday night.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
Four-year-old Ava was diagnosed with Prader-Willi Syndrome shortly after birth.
“At birth, Ava was floppy, she was like a rag doll. Her blood work was sent to Sydney when she was 24 hours old,” Ava’s mum Bec said.
Common characteristics of Prader-Willi include small hands and feet, abnormal growth and body composition, weak muscles at birth, insatiable hunger, extreme obesity, behavioural issues and intellectual disability.
“Ava slept for around 23 hours a day. If you visited our house during the first nine months you would never have heard a newborn cry,” Bec said.
“She also had a very poor suck reflex and often required tube feeding and concentrated formula to ensure she was receiving enough milk. She was deemed failure to thrive because she had extremely poor growth and weight gain.”
Ava requires regular physiotherapy, occupational and speech therapy, and despite her condition, her mum says she never gives up.
“While our lives are different we also believe that we are very blessed to have her in our family. We always believe that Prader-Willi Syndrome hasn’t made our life worse or better, it is just different,” she said.
Bec said one of the most “mysterious aspects” of Prader-Willi is the inability to feel full.
“Ava has an uncontrollable urge to find food and eat it. Our house has been renovated to ensure that all food items, the refrigerator, bins and other items are secure. Ava eats to a schedule and is on a restricted diet, which is overseen by a dietitian specifically experienced in the treatment of Prader-Willi,” she said.
Ava requires constant supervision to ensure she doesn’t try to “steal” food. Ava’s siblings Noah, 8, and Mia, 6, are also restricted with activities at times to keep their sister safe.
“We don’t have chocolate at Easter, dessert, long feasts at Christmas time or the freedom to eat whatever we like. Birthday cakes are had once Ava is in bed and they’ve watched their sister fight through critical illness and spent many hours in children’s hospitals and Ronald McDonald houses,” Bec said.
Ava’s future is uncertain, with many drugs on trial to manage hyperphagia deemed unsuccessful.
“Ava faces a future where she will require 24/7 supervision to ensure her safety. We spend a lot of time trying to find a balance between optimism and realism.”
Li’l Achievers is hosting an art exhibition on Friday from 6-7pm in support of Prader-Willi Association Australia. Parents can buy their child’s artwork. A raffle will be held to win local business vouchers.
