Doctors told Denise Bray that her 18-month-old daughter was vomiting because she had a virus. But it was the mothers of other children with Williams syndrome who told her what was really going on.
Denise says it was the family’s first time at a New Zealand Williams Syndrome Association family camp. “My daughter was 18 months. She was just on solids and she was vomiting all the time and about three mothers said: ‘She’ll have Celiac Disease – get her tested’.”
So Denise did get her tested and the doctors confirmed it. “They said she had severe allergies and she was probably allergic to several things, but she definitely had Celiac Disease.”
No one understands what it’s like to raise a child with an intellectual disability better than other families struggling with the same issues. Intellectual disabilities, such as William syndrome, aren’t always well understood at the local medical centre and it’s often other parents who can throw the lifebelt at the right time.
“Because it’s quite a rare condition, the doctors in New Zealand often don’t know much in terms of day-to-day support. You get it from other parents,” Denise says. “Sometimes other parents can give you that invaluable advice as to what they have done.”
The IHC Foundation makes it a priority to fund organisations that support families. Top of its list of five priorities for funding are projects that build family networks and support access to information.
The Foundation has contributed funds towards the New Zealand Williams Syndrome Association’s biennial conference since 2012. The conference alternates between the South Island and North Island to make it as easy as possible for families to attend. As many 30 families come to the camps to participate in educational and support forums and to hear visiting experts provide updates on the latest research, treatment and support strategies. The association has between 80 and 90 members.
“Conferences for parents/caregivers and people with disabilities can make a huge impact through the sharing of information, resources, strategies and experiences,” says IHC Foundation Chair Sir Roderick Deane.
The association’s most recent conference, in Rotorua last year, featured Dr Melanie Porter, a Senior Clinical Neuropsychologist and Director of Director Centre for Research in Atypical Neurodevelopment at Macquarie University in Sydney. She is a specialist in Williams syndrome, Down syndrome and autism – and her research now includes New Zealanders as well.
To its previous conference, in 2015, the association invited American Developmental Psychologist and author Dr Karen Levine. She camped on site and spoke to families about how to coach children out of the phobias and anxieties they often experience – how to deal with the noise of thunder or even the lawnmower.