The first time I attended a Syndromes Without A Name – Australia event, I’ll admit I wasn’t sure it was the place for a family like ours, living with a severely disabled child with a life limiting condition.
Matthew was the only child I saw that day at Undiagnosed Children’s Awareness Day, in a wheelchair, I saw a lot of kids on the gym mats and twirling ribbons. He looked adorable – at the time we were trying these cute blue glasses that reminded us of Minions – right away they took photos and asked if they could use his photos for the SWAN brochure.
SWAN soon became one of our most supportive non-government organisations.
The founder – Heather Renton, has become a good friend.
Her daughter, Becky received a very rare diagnosis and Heather asked about support groups available for the condition.
“None.” The reply came. Something like SWAN would be just the thing, but it wasn’t in Australia, there was a chapter in the UK. “You could start a chapter in Australia.”
So she did. Heather is a massive advocate for genetic counselling and funding. She works tirelessly to get grants for SWAN to support the families and further the cause. Lobbying politicians to ensure it stays on their radar.
Many families with children, who aren’t quite as unwell as Matthew was – costing the hospital thousands of dollars a week each time he was admitted – don’t have the support and funding of the hospital to access the best genetic testing. They have to fight for their regular paediatricians or even GPs to even think about an overarching diagnosis that explains the symptoms their child battles every day.
Heather and the team at SWAN fight to make the funding available to those families so they can get answers, for any hope of looking for a treatment, that might just assist with or even reverse the effects of their child’s condition.
One of the phrases that ties us together as a group is when we’re talking with our doctors and ask a question about the condition or symptom, ‘what happens next?’ or the cause of something, we invariably hear ‘Well, I don’t know…”
Over and over again.
Sometimes the diagnosis of a rare condition doesn’t change that response at all.
I remember within in a week or so of Matthew’s very rare diagnosis, we had stepped up his pain medications and were switching to something we hadn’t tried before. I asked, “How long does it take to work?”
The team looked at each other and said to me, “Well, we don’t know how HDAC2 effects Matthew’s response to medications, we could tell you what the drug books say, but that won’t mean much.”
“Great,” I thought laughing to myself “Now I get a really long answer for ‘I don’t know.”
It really was no different than before, now they could name the condition that they didn’t know anything about. It actually makes me a world expert on the chromosomal abnormality effecting HDAC2. Ha.
What makes SWAN so different is it directly supports parents, something we didn’t find anywhere else.
SWAN sometimes hosts Information session with guests like;
– Carers Victoria, to talk about self-care or the supports they offer.
– State Trustees, to help share information on legal issues arising from older children with
intellectual or communication issues or that are going to potentially outlive their parent’s
but still require full-time care.
– NDIS Advisors, to help with NDIS planning tips, self-management guides.
SWAN Hosts events like Parents Dinners, a drink or two, a beautiful dinner all put on by SWAN. Mothers events, like High tea in the botanical gardens, Mocktails or cocktails at a Madame Brussels.
Truly unique to SWAN a fantastic men’s group.
My husband has attended every event since his first I believe.
They’ve done ten pin bowling, mini golf, parma nights, lawn bowls, but it mostly involves having a drink or so. Luke says “It’s a close community, they don’t see each other often but the bond of their circumstances holds them together.”
SWAN have also started a grandparents group.
Luke says it might help empower grandparents who would otherwise wash their hands of the situation saying to themselves,
“It’s too complicated, I don’t know anything about it. I can’t help.”
Which leaves families without some basic support, by no means an obligation, but we all know it takes a village to raise a child and a special needs child or one with a disability or difference, even more so. Especially if they have siblings.
It was with SWAN I learned that terms like ‘Chronic Lung disease’ and ‘Global Developmental Delay’ are not explanations of conditions or a diagnosis as such. They are place holders or a label given to flag a problem with no clearer explanation.
‘Chronic Lung Disease’ could be caused by something like Cystic Fibrosis or something extremely rare like Matthew, HDAC2 which causes low tone and the brain stem not to send the correct messages, leaving his lungs vulnerable.
‘Global Developmental Delay’ could be caused by a sensory issue, blindness, deafness, autism or like Matthew an undeveloped brain stem and abnormal brain development.
I learned that some so called ‘diagnoses’ are really just mean, more questions need to be asked.
I have also noticed in the time since I have joined SWAN that many parents join eagerly hoping to find someone else with a child just like theirs, and while it does happen, what is more likely is to find a family just likes theirs;
Fighting a system that really only knows how to support the known and common conditions, treatments that only take in to consideration ‘normal’ parameters. Going round and round in circles searching for answers, hoping that science will catch up with what they already know so they can find some clues that might help their child.
I have realised in the weeks following Matthew’s passing, caused and Massive amount of frustration, anger and anxiety. Constantly battling the ‘experts’ because they want to treat our kids like ‘normal’ kids and that left, Matthew at least, vulnerable because he never met the criteria for ‘normal’.
This is what makes SWAN unique, not that the conditions they support are the same, but that they are unique.
I had to add the photo of Matthew from their website (taken at that first open day) it is just so Matthew back then, apologies for the quality.