Who We Help

Ryan has a very rare condition

Last year, four-year-old Ryan was speaking in two-word sentences, and poor balance prevented him from running and climbing like other boys his age. Now, he can tell his Mum Danielle a story, and he can confidently play in the playground with his Mum and Dad.

They’re development milestones many parents would take for granted, but Ryan is thought to be the only person in Australia with Chronic Infantile Neuro-Cutaneous Articular (CINCA) Syndrome – an inflammatory disease with arthritic symptoms, that has caused him to spend much of his life in hospital.

Ryan is one of the first clients of MontroseAccess’ Early Childhood Program for young children with difficulties in areas such as play and speech, which – one year on – is celebrating some remarkable client achievements.

“Ryan was born with a rash all over his body,” explained Danielle. “Later on he became very unwell with meningitis-like symptoms. He was in hospital for months and no one knew what was wrong. And all the time spent in hospital delayed his development, play and speech.”

Ryan was referred to MontroseAccess' Early Childhood Program, where regular visits from a physiotherapist, speech pathologist and occupational therapist have seen huge improvements in his motor skills and confidence.

"Before coming to MontroseAccess, we didn't know what level Ryan was at, making it difficult to look to the future," Danielle said. "Now he is mastering skills like speech and balance. He's going ahead in leaps and bounds, making wonderful improvements. We're thrilled - starting Prep is our new goal."

Nadine suffered a stroke at age 16 months.

Dean and Petra had just moved to a new city with their two young daughters, Rochelle and Nadine, when Nadine began behaving strangely compared to her usual outgoing self. The doctor told them she was suffering from stomach cramps and to take her home and let her rest. On the way home, Nadine’s little body went still and she did not move. At just 16 months of age, she had suffered a stroke.

Virtually overnight Nadine had limited movement on the left side of her body, and she was induced into a coma for 10 days to relieve stress from her brain. She spent another six weeks in intensive care.

As soon as Nadine was removed from intensive care she began physiotherapy, to assist with movement on the left side of her body. Doctors advised Dean and Petra that Nadine may never be able to walk.

“When she would smile the left side of her face would not move. Nadine was now very quiet and would not speak or make any sounds. We did not know what was going through her mind - she looked lost,” said Petra.

The hospital in Tasmania, where Nadine was receiving physiotherapy referred her to MontroseAccess. Since that day, Nadine and her family have never looked back. With the support of MontroseAccess, Nadine is able to receive all the assistance and therapy she needs to remain a positive and active child.

“We are so grateful to receive services from MontroseAccess. The therapists visit Nadine at her school and provide assistance with everyday problems that may arise. They are so helpful and provide Nadine and our family with a lot of support,” said Petra.

Nadine receives regular physiotherapy, occupational therapy and speech pathology from MontroseAccess. Because of the severity of the stroke, she will require ongoing physiotherapy for the rest of her life.

“Nadine especially enjoys attending MontroseAccess’s recreational camps, as it’s the only time she can attend camps and join in with the other children – there are no limitations to what she can do,” said Dean.

Mitchell has Duchenne Muscular Dystrophy (DMD)

Mitchell, 15, has Duchenne Muscular Dystrophy (DMD), a condition which causes the progressive weakening of the body’s muscles. He has been is an electric wheelchair since he was nine years old.

Diagnosed with DMD at two-and-a-half, Mitchell’s parents have to deal with a reality that turned their world upside down. While David believed in "doing the best you can with the cards you’ve been dealt", Natalie’s initial reaction was very different.

“I ran from it for those first couple of years. I worked a lot and just wasn’t accepting it. As a mother, you take on an element of blame during the grieving process,” Natalie admits.

“But then comes the acceptance stage. Well, maybe it’s not ‘acceptance’ as such, but you learn to appreciate what you have got, rather what you haven’t got.”

“Mitchell is a constant reminder of how fortunate we are,” continues David. “If ever I get frustrated I put myself in his shoes and imagine I can’t do the littlest thing that we all take for granted.”

As a client of MontroseAccess for almost eight years, Mitchell benefits from regular physiotherapy, occupational therapy and social work to manage his condition.

He also has a carer from MontroseAccess, Brett, who comes over on weekday mornings to help him shower, stretch, eat breakfast and get dressed for school.

For Natalie, it is hard to express how invaluable Brett’s loyalty to Mitchell has been.

“I don’t know how we would manage without the continued respite we receive. To me, it’s both a gob-smacking and humbling experience to know there are still amazing people like Brett who have the empathy and dedication towards a child who is not even their own,” says Natalie.

“The therapists are more like a family structure and they’ve helped us immeasurably through the hard times.”

“The support from MontroseAccess has been priceless to us as a family.”

Personal Stories

Danielle and Ryan

Nadine, Petra and Rochelle

Mitchell and Ryan