How world-class care and acts of kindness make a difference
Hearing the news your child is sick
At just 13 weeks old, Mahalia was diagnosed with a rare condition – Chromosome 22 microduplication syndrome. With this condition being a duplication of chromosomes rather than a deletion, there was very little information available. Doctors could not be sure exactly how it would affect Mahalia, as every presentation is different. Being so unpredictable, Mahalia’s family were told to take her health day-by-day, and so their journey into the unknown began.
Growing up in hospital
Receiving endless treatments and therapies, and ongoing testing for new conditions is life for Mahalia. Her medical needs and behaviour issues are complex and shape day-to-day life for the family. Making any plans is difficult knowing her condition could flare and become an emergency in a matter of minutes.
Having spent majority of her life in the Queensland Children’s Hospital, many of Mahalia’s most precious milestones – some medical professionals never expected her to hit – have been reached within the wards and in Kidzone. Watched, encouraged and admired by nurses, doctors and the Children’s Hospital Foundation team, who are now considered extended family.
Mahalia’s mum, Kristie now looks after her full-time, and while life is a world away from what she expected it to be, she lives in awe of her daughter’s strength and bravery.
Hope for a fulfilling future
To ensure Mahalia is given the best chance to thrive, doctors will work through a list of possible sub diagnoses – selecting 5 to 6 conditions to test for each year. As she grows up, many of her health issues may remain a mystery, but her family are determined for her to live her best life.
Going to hospital is normal for Mahalia, but Kristie is thankful for the Foundation supporting and enhancing every visit. From cuddle carers when she was a baby to nutritious frozen meals following an emergency admission, volunteers at her bedside and play days in Kidzone, making Mahalia feel safe and comfortable in the hospital environment is a priority. Kristie knows the Foundation is with her every step of the way.