By Danielle Galvin
IF THESE hands could talk… they’d be screaming at you.
These are the words from the children living with Type 1 diabetes who have joined the fight to find a cure and lead a normal life.
Two local mums and their families have taken it upon themselves to put the relatively unknown disease on the agenda with posters popping up in doctor’s waiting rooms, pharmacies, childcare centres across the region and all over Australia.
Longwarry’s Suzie Silva’s son Tristan Pope was diagnosed at 23 months.
She said there is a lot of misinformation about the disease but the power of the poster and getting it out there has been a rewarding experience.
“We are hoping to get awareness out by putting the posters up at all schools, kindergartens, childcare centres, doctors’ surgeries, pharmacies, everywhere,” she said.
“So far we have got a huge response on Facebook and people have messaged us and requested copies for their communities.
“It has gone to Australia wide to each state and global as well as far as America.”
Ms Silva said people often believe the disease is caused by obesity or too much sugar.
“We are finding that more and more kids are being diagnosed, we are finding that parents don’t know the symptoms,” she said.
“So we thought we need to get the information out there somehow due to lack of awareness.
“We thought while parents are sitting at the doctor’s surgery, they can look up at the wall and see it and read the symptoms and request more information and advice.”
Deb and Neville Bayley’s 12-year-old son Ryan was diagnosed at two-and-a-half. Like Suzie, the Berwick family saw the need to raise awareness in the community and have started their own campaign to do exactly that.
“There is such a need for it – if the doctor doesn’t lead you towards Type 1 diabetes then you can walk away thinking it’s a virus, or they are just sick in the stomach,” Neville said.
“Some posts on the Facebook page The Courageous 1’s where parents have taken the kids three times to the doctor or more.
“But the response from people has been amazing – families say these posters need to be everywhere.”
On Sunday 20 October, the mums, who meet regularly with others from their informal support group, will do the Walk to Cure Diabetes for the Juvenile Diabetes Research Foundation (JDRF).
The group is called The Courageous 1’s in honour of their kids who give them strength every day.
Neville said empowering parents to ask the right questions was the idea behind the poster.
“It’s about empowering a parent – if they don’t know the questions to ask, they can see the signs and say there are two of these things on the poster that my kid has been doing this week, they can go in there armed with a question – and ask what about diabetes?”
In the Type 1 diabetes community, there has been a lot of support for the group.
“It’s trying to educate people about the difference between the two, you always hear about Type 2 diabetes,” Deb said.
“We wanted to just to make it purely Type 1.
“While I am putting up our posters, people are saying it’s such a great poster.”
There were some classic signs with Deb and Neville’s son Ryan that they picked up straight away.
“With Ryan, I kept smelling this strong odour on his breath and I kept saying to Neville, something is not right, he was only two-and-a-half at the time,” she said.
“Excessive wetting and demanding the sipper cup were the classic signs but we were lucky with what I had told the doctor, he did the test right there.
“I find I am educating people on the spot – often people have never even heard of Type 1 diabetes.”
For Deb, it can be frustrating when people mistakenly believe that Ryan will ‘grow out of it’ like childhood asthma.
But is has made her resolve even more strong, because she knows she wants to find a cure.
The Courageous 1’s team and Facebook logo is a hand based on a touching moment where Ryan spoke to his mum about how he feels about the disease.
“Ryan had a moment of why me, he was saying no one understands,” she said.
“He was crying and he held out his hands and said if these hands could talk, they would be screaming at you
“I took that memory of what he said and we spoke to a friend of ours and I told him and he said oh my goodness that is so powerful coming from a child.”
Most of the places the mums have visited to ask to put their poster up and educate parents have been very receptive. Suzie believes there is a rise in children being diagnosed with Type 1 diabetes.
“In my peer support group in Warragul – there were 10 newly diagnosed last month,” she said.
“If we could only encourage all doctors to do a simple five second finger prick test or a urine test, it would reduce the number of young kids being admitted to the ICU.
“There were 60 in Casey in the month Tristan was diagnosed just over three years ago.
“Numbers since then have greatly increased.”
To donate to the walk in October, visit http://walk.jdrf.org.au/teamParticipant.asp?teamID=315.
