Tommy’s story

Tommy has been a fighter since before he was born.

At 28 weeks, his mum Cindy was told her little boy had a rare genetic disorder and the devastating reality that her unborn son had a 2 per cent chance of survival.

“We had a scan which showed that all his long bones were not just short and bowed, but they had an appearance of being fractured too,” Cindy recalled.

The official diagnosis of hypophosphatasia came four months after Tommy was born – after months of genetic testing. Tommy spent the first part of his life at Queensland Children’s Hospital in Brisbane, separated from his dad and older siblings who remained in Cloncurry.

“Tommy was in Paediatric Intensive Care Unit (PICU) for 210 days."

“He was on Non-Invasive Ventilation, and eventually a subcutaneous injection under the skin three days a week of a drug that is approved on compassionate grounds as it is not yet available in Australia.”

Tommy is proving to be a little battler – but the journey ahead is complicated and complex.

“This wonderful drug that we are fortunate to receive means that we are back together as a family and we have many doctors and staff to thank for that,” Cindy said.

“Tommy has regular three-monthly trips back to Queensland Children’s Hospital for check-ups and has three-monthly bloods at the same time.  He will have to have his Strensiq injections for the rest of his life, the only thing that might change will be the frequency and the dose.

“There are plans in progress to have his teeth crowned and also remove his tonsils and adenoids.

“He may also have to have more cranial vault surgery due to his head circumference measurements not increasing like they should.

“We hope that he can live as normal a life as possible. No one knows the outcome or length of Tommy's journey, however, we are confident.

“Considering Tommy had a 2 per cent chance of survival and 50 per cent chance later on of leaving hospital, every day is a milestone for us and we cherish every moment we have with him, as nobody knows what the future holds.”

While Tommy was in hospital, he loved music therapy, pet therapy and visits from Children’s Hospital Foundation volunteers to play games.

Tommy is one of 19 ambassadors for the Woolworths Regional Wall Tokens campaign.

By purchasing a $2 wall token from now until the end of September, you are helping fund equipment and programs in your local hospital, which help families like Tommy’s through an emotional, stressful, and at times uncertain journey.

Woolworths Regional Wall Tokens is an opportunity to highlight some of the brave kids throughout Queensland and northern New South Wales, who you can help by purchasing a wall token.

Other ways you can help

Everything we do for sick and injured kids is made possible by the generosity and support of our donors, partners and the community.