Daria

Since from diagnosis (Daria is now 16) she has been admitted to hospital more than 100 times and undergone 50 major surgeries.

Hurler Syndrome (or Mucopolysaccharidosis Type 1) affects about 1 in 200,000 children. It is a progressive illness, causing severe damage within the body, particularly to the brain and bones.

Her mother Trina says: “There is no definite cure for the condition so all we can do is treat the symptoms as they arise. For many children if they have an infection it means a trip to the GP and antibiotics but for Daria it means a lengthy trip to hospital and possibly an admission to the Intensive Care unit.”

At the age of two, Daria received a life-saving cord blood transplant from her younger brother to replace an enzyme that she was missing at birth. In the years since, she has also needed five neck surgeries to preserve her spinal cord, and numerous back and knee procedures to improve her mobility.

Daria will continue to have regular surgeries to improve her quality of life. This year, she will have another 5 surgeries to improve and restore movement to her hips, wrists and fingers.

Despite the many challenges she has already faced and will face in the years ahead, Daria still has a very positive outlook on life and loves to laugh.

“Daria has a wicked laugh! We’ve lost track of how many admissions she has had but she continues to laugh and smile at whatever life throws at her,” Trina said.

And she doesn’t back away from a challenge either – most recently, with her mum by her side cheering her on, Daria completed the Noosa Special Triathlon.

“It was amazing to watch. I never in my wildest dreams could imagine her doing a triathlon but I think that just goes to show what a determined girl she is,” Trina said.