Below: Margaret Watson with daughter Meagan, who has broken every bone in her body and lives with constant pain.
By Sarah Schwager
A HAMPTON Park mother has told of her disabled daughter’s daily battle against the odds in an effort to highlight the growing crisis in disability services in Victoria.
She spoke out as disability groups from across the state met on Tuesday to form an alliance and launch a public campaign over the lack of funding and services.
The Coalition for Disability Rights for the first time brings together people with disabilities, families, carers, advocacy organisations, peak bodies and disability support providers.
With no government support, Margaret Watson must fundraise to get the much-needed equipment and surgery that her daughter, who was born with a rare condition, will need for the rest of her life.
Meagan, nine, has Cole Carpenter Syndrome, the major symptom of which is bone fragility.
According to Ms Watson, Meagan is the only girl in the world who has the syndrome.
The grade three Kilberry Valley Primary School student has broken every bone in her body and despite not being expected to live past two weeks of age, she defied the odds and survived.
The National Children’s Choir member now stands at just 105cm and has experienced more physical pain in her nine years than most people experience in a lifetime.
Ms Watson, a single mother of Meagan and 10-month-old Stephen, had to fundraise $14,000 for bathroom modifications and $13,500 for an electric wheelchair.
She now needs a van with an electronic ramp and good suspension, which would cost $40,000, to minimise the risk of Meagan breaking bones and prepare for the day when Ms Watson can no longer lift her.
Meagan also needs ongoing surgery to put rods in her arms and legs to stop her bones from growing in a bow shape after they break.
“I don’t want to fundraise because it looks like I’m begging, but there’s no other way I can get that sort of money,” Ms Watson said.
“There is no organisation anywhere that assists with modifying vehicles.”
Coalition for Disability Rights spokeswoman Sue Jackson said all the participants in the coalition were united in their concern about the shameful shortage of disability services.
“One in five Victorians has a disability. Action must be taken to end the neglect and chronic under-spending which is affecting so many Victorians,” Ms Jackson said.
“Thousands of families are struggling every day because of the lack of government funding and support for accommodation services, for vital equipment, for respite care and for early intervention services for children.”
Meagan has developed an ulcer in her stomach from the stress of the treatments and the stress the lack of money has placed on her family.
“She knows we need the van because she’s getting heavier,” Ms Watson said.
“She said ‘that’s okay, I’ll stop eating’. It’s very frustrating. These kids are born with these conditions and they get nothing. The first time she said she wanted to die it broke my heart.”
The coalition will now call for all political parties and candidates across Victoria to respond to the crisis in disability services.
