14-year-old Damian has a collection of dad jokes that would be the envy of any father! He’s the undisputed joker of the family. His younger sister, 11-year-old Jesse, is strong and inquisitive with a flair for creativity.
Growing up, the siblings had mild development delays, joint issues in their fingers and like lots of kids, frequent coughs and colds. But nothing prepared the family for the diagnosis that both children had the same rare degenerative disease known as Mucolipidosis III. Damian was six and Jesse just four.
"It was such a shock; we were in disbelief that they could both have this condition," mum Juanita said.
Mucolipidosis III is a cell storage disorder that causes bone abnormalities, joint pain and stiffness, vision problems and heart complications. It affects every part of Damian and Jesse's bodies.
There is currently no known treatment or therapy to cure the disease.
To manage their condition, Damian and Jesse are regularly in Queensland Children's Hospital in Brisbane for specialist appointments and surgeries.
Originally living in Cairns, the long travel south to Brisbane for treated added too much stress, so they ultimately made the decision to move to the Gold Coast. Dad Richard had to leave his job and now works nights so he and Juanita can share the load caring for the kids and managing the demands of ongoing treatment.
Juanita said the hardest part is seeing Damian and Jesse miss out on all the things that children their age normally do.
"They live with constant pain, monthly infusions and ongoing surgery. We have to pace ourselves with activities, so they don’t become too exhausted," she said.
While hospital is part of their lives, thankfully so is Starlight.
Damian and Jesse love visiting the Starlight Express Room to take a break and have fun with Captain Starlight. Jesse gets creative with arts, crafts and slime-making, while Damian plays the latest video games. The Starlight Express Room gives them both something to look forward to and they can forget about the reality of their illness for a while.
Juanita says Starlight helps change the focus of hospital.
"If the kids didn't have that to look forward to, they would hate going to hospital and just relate every visit with pain."
When Damian and Jesse can't leave the hospital ward, Captain Starlight visits them helping them laugh and just be kids again. They even made Damian laugh during an emergency admission, distracting him from his tears.
Juanita sees enormous benefits in both her children from the fun and respite Starlight gives them.
"It helps them build the resilience they need to face their ongoing treatments and surgeries. They have to go through so much pain and Starlight gives them relief and time out to cope. Thank you from the bottom of my heart for making a such a huge difference in my children’s lives."
