Three-year-old Ivy Brown’s rare genetic disorder means she’ll likely stop growing by the age of six.
The Albion Park girl has a rare genetic disorder which means her body doesn’t produce enough of the enzyme needed to break down or recycle materials the body can’t use.
The condition, MPS (mucopolysaccharidosis) 4a, leads to those materials building up in tissues, bones, and major organs, which can cause serious problems – including heart disease, skeletal abnormalities, vision and hearing loss, difficulty breathing, and early death.
There’s no cure right now, but there is hope thanks to a life-saving treatment Ivy now has access to at Westmead Children’s Hospital.
Ivy undergoes weekly infusions of the enzyme replacement therapy Vimizim – which is not only keeping her alive but has even seen her grow 3cm in the past year.
“Ivy is the youngest child with this condition to have started this treatment in the world so no-one can say how it will help her – what we do know is that it’s keeping her alive,” her mother Elouise Brown said. “Normally children with this condition stop growing at six years old. Ivy is 90cm now – she may get to 1m or 1.2m maximum.”
While there were early signs, Ivy was not diagnosed until she was 16 months.
“Ivy doesn’t have a neck, her chest is predominant. She can’t do things kids her age can do – like jump on a trampoline or jumping castle or play sport,” Mrs Brown said.
“So while her brain is not affected, she is limited in what she can do physically. By the time she goes to school she’ll need assistance walking, and writing, her eyesight may go.
“We don’t know what the future holds, but what we do know is that we have her now, she’s happy, she’s somewhat healthy and we wouldn’t change her for the world.”
Mrs Brown said family and friends, the Albion Park community, and the staff at Westmead Children’s Hospital have been a wonderful support for her, her husband Grant, eldest daughter Isabel and importantly for Ivy.
Ivy is one of the faces of the Sydney hospital’s biggest fundraising event of the year, Radiothon 2018. The 24-hour appeal will be broadcast on-air with smoothfm and live with 7News Sydney from 6pm on Thursday October 11.
The aim is to raise $4 million for lifesaving equipment, delivering vital services to patients and families and to conduct research into childhood diseases to help sick kids like Ivy.
“We were devastated by her diagnosis and we couldn’t access the treatment for 12 months as it was so expensive – it was then made available to us at Westmead and we are so thankful because without it she wouldn’t have survived,” Mrs Brown said.
“But without the nurses, and other staff, being the way they are the kids wouldn’t want to come here. Ivy never complains any treatment she has and does it all with a huge smile on her face.
“I don’t know where she gets her strength from, she’s a little character and brightens everyone’s day.”
Meantime Mrs Brown encourages anyone who sees Ivy with her family, to come up and say hello.
“People look at Ivy and know she's different, but I don't want them to stare, I want them to come say hello and meet the Ivy that we all know,” she said.
“She’ll want to be your friend and when you start talking to her you won’t be able to get away – but you won’t want to leave her.”
Westmead Children’s Hospital is the largest paediatric centre in NSW, specialising in treating seriously ill children. To donate or for more information, head to www.radiothon.org.au.