This is Mahalia Villiers.
The brave little girl from Brisbane has spent the majority of her life in and out of the Queensland Children’s Hospital after being diagnosed with a very rare and relatively unknown condition.
Despite everything she’s been through, she remains strong, determined and full of sass. Her parents, Kristie and Daniel spoke to Mum Central about their journey so far and what life is like for children like Mahalhia who call the hospital ward their second home.
Didn’t seem like a normal baby
As Kristie tells Mum Central, Mahalia was born full term but incredibly small at birth. From the moment she arrived home, she screamed.
At about the six-week mark, I took Mahalia to the GP because my mum had commented on how Mahalia didn’t seem like a “normal baby”, Kristie shares with Mum Central.
“Mahalia was my first child, so I thought all babies cried and didn’t sleep. Little did I know that a baby was supposed to sleep more than three hours in a 24-hour span, not vomit after every feed and not scream 20 hours a day.”
Mahalia’s GP noticed the newborn was losing weight and not meeting any milestones. She was admitted to the hospital for the first time at 10 weeks old due to weight loss and feeding concerns.
“We didn’t know at the time, but this was the start of a very long journey that we were absolutely not prepared for.”
Two weeks after that first hospital admission, Mahalia returned for another stay. She was just 12 weeks old and this time around, she was fitted with a feeding tube.
“It was only supposed to be for a couple of weeks until she was strong enough to feed for herself. It’s now been 7 years.”
A difficult diagnosis of an unknown condition
After what felt like endless tests, doctors confirmed Mahalia has a very rare condition known as Chromosome 22 microduplication syndrome.
This was a relatively new syndrome and unknown condition only found in the 90s with very little data on it. What we do know about it is that affected individuals may have an intellectual or learning disability, developmental delay, slow growth leading to short stature, and weak muscle tone (hypotonia).
Kristie and Daniel questioned what this condition meant for their daughter and the doctor realistically had no idea. Because Mahali’s condition to so unknown, it was especially hard to know what to expect.
“Our paediatrician and the genetic specialists discussed with us that Mahalia may never walk or talk, and they weren’t sure what her quality of life would look like.”
Growing up in hospital
As Mahalia grew from a newborn to a toddler, the constant crying subsided. The vomiting also lessened. The trips to the hospitals increased as did the therapies.
Mahalia learned to walk and talk on the hospital ward, surrounded and encouraged by her parents and the hospital staff who were unsure if she would ever reach these and other milestones.
For Mahalia, the hospital was and still is her second home. The staff are part of her extended family and she has made friends on the ward that she looks forward to visiting every week.
For many kids, the hospital can seem a bit unwelcoming but for children like Mahalia, it’s so important that they feel comfortable, supported and secure, whether they are there for an appointment or there for an extended stay.
Our lives can change in a second – we might start one day as a totally normal day and then by the afternoon we are admitted to hospital with no warning waiting for surgery.
We also have a lot more support that surrounds us and help us through the hard days, including the Children’s Hospital Foundation. We have become better at dealing with emergencies and chaos and finding happiness in between the chaos.”
Because many of her health issues remain a mystery, doctors continue to test five to six possible sub-diagnoses each year. She also attends a minimum of two therapy appointments every afternoon which leaves very little time for play dates and team sports.
“We have become okay with not knowing how the future will pan out for Mahalia. We don’t really know what tomorrow will bring, so we like to focus more on today.”
While life for Mahalia is a world away from what they first expected, Kristie and Daniel are so grateful not only for their daughter’s incredible spirit but for the neverending support they’ve received every step of the way.
“Mahalia is literally a breath of fresh air and sees the world in a completely different way to others. She has taught us to be better people over her short life-span.
Her personality is bigger than life at all times – I’ll ask her to put on some house clothes and she will come out in a full ball gown, a handbag and a hat just to casually go and water the yard.”
Mahalia’s Message: Support Sick Kids Giving Day
In true Mahalia spirit, she wanted to share her story with Mum Central to raise awareness for her “besties” who “make me happy at hospital” and support the Childen’s Hospital Foundation.
Her mission is to encourage the community to donate to the Children’s Hospital Foundation Sick Kids Giving Day on Thursday 8 June – where all donations to the Foundation will be matched by generous supporters.
This is the first year for Sick Kids Giving Day but we think it’s a beautiful idea to help sick and injured children across the state.
Sick Kids Giving Day is Thursday 8 June 2023 but you can donate anytime. Head to sickkidsgivingday.org.au to support kids like Mahalia and other children who call the hospital their second home.
