Thursday, 9 March 2017

Happy 25th Birthday Meningitis Centre Australia

Cameron - Meningitis Centre Australia 25th Anniversary

Last night Cameron joined Meningitis Centre Australia to celebrate their 25th Anniversary.

The Meningitis Centre was formed after a group of parents were invited to meet with Dr Fiona Stanley, at the Telethon Kids Institute, to discuss their experiences of having a child contract meningitis. At the time there was very little awareness of meningitis but people were dying, or surviving with disabilities, from this scary disease that can take a life in only a few hours if not treated quickly. As the parents shared their stories it became apparent that awareness needed to be raised amongst the medical fraternity, and amongst parents, about meningitis and the best people to do that were parents who knew first hand how devastating this disease can be.

We sat in hospital 4 years later and found the Meningitis Centre's very first brochure which became our bible to answer even the simplest of questions, such as - how do your spell meningitis? At this point the centre was very much a support group for families, an information service and advocacy had started to get meningitis vaccinations developed and on to our free Australian vaccination schedule. The driving force behind all of this was Bruce Langoulant who's daughter Ashleigh had contracted Pneumococcal Meningitis 8 years earlier, the same strain of meningitis as Cameron had, and been left with severe disabilities as a result. Their family became our beacon of hope as we sat in hospital with our comatose child not knowing what our future held but instinctively knowing it was never going to be the same again. I could see that life had gone on for them and they had survived, so I was able to convince myself that we would survive too.

When your child is not born with a disability you automatically don't belong to those parent groups. When your child is not the victim of a horrendous accident or incident you don't belong to those groups either. When your child doesn't have a specific label for their disabilities it leaves you not belonging to any groups for support so the Meningitis Centre became our haven during Cameron's childhood because when we met up with other families who had experienced the same life changing trauma as we had we felt understood and comforted. It hadn't all been a crazy, made up dream. Meningitis Centre coffee mornings became a highlight of my calendar.

When you move amongst the meningitis community you quickly realize that everybody has experienced different strains of meningitis. Some people have passed away, some have survived with no apparent after affects - although some after affects appear later in time. Then there are those who have been left with many different and varied disabilities and medical issues according to how their body has reacted to their strain of meningitis. We've met people with growth issues, amputated limbs and other body parts, deafness, blindness, cerebral palsy, autism, behaviour issues, mental health issues, brain damage, loss of speech, learning difficulties, lack of physical abilities and many, many more. Then you have health issues with epilepsy being a big one. Everybody is different but every family shares something in common and that is the trauma of what happened the day their family member became ill. That trauma is never forgotten and is scarring. You hear common threads in everyone's stories whether their stories are 25 years old or 2 years old. Every time you hear somebody else's story your emotions swell because you're hearing your story again.

25 years later, thanks to Bruce and the Meningitis Centre, we have free vaccinations available nationally, in Australia, for Hib Meningitis, Pneumococcal Meningitis, Meningococcal C and a vaccine available for Meningococcal B which you can buy. Plus, just in the last month, Western Australia has shown huge leadership by being the first Australian state to make a free vaccination available for Meningococcal A, C, W and Y, with several other Australian states following their lead.

Who knows how many lives have been saved due to the meningitis vaccines being developed and made available nationally. How many families have been spared the trauma of this terrifying disease, every family is traumatised no matter what the outcome. Or how many families have been spared the on going trauma and cost of lifetime care for a disabled family member. We will never know but we do know that in Australia Hib Meningitis has now disappeared and all vaccinated meningitis strains have dropped.

Not everybody chooses to vaccinate, for varying reasons, but the Meningitis Centre has worked tirelessly to raise awareness of all the strains of meningitis in the hope that families will vaccinate. If they don't vaccinate, for whatever reason, then they will hopefully be aware of the signs and symptoms of meningitis and they will be aware of the need for speed in getting medical assistance. We know many people who got help quickly and their family member has been able to go forward with limited or no after affects and live a productive and happy life. Every minute counts.

The worlds population is now so transient that strains of meningitis previously only seen in certain pockets of the globe are now seen around the world thus the need to expand awareness and vaccination protection globally. The Meningitis Centre didn't stop at only worrying about families in Western Australia or just Australia, they joined with meningitis organisations around the world to form CoMo - Confederation of Meningitis Organisations - to work together globally and assist each other in every ones primary goals, to eradicate meningitis through vaccination and raise awareness of the signs and symptoms. Shared resources and knowledge make a little go a long way and most of theses organizations have been created and run on parent power.

The question was asked last night if the Meningitis Centre was still relevant 25 years later. Considering their success in raising awareness in the general community about meningitis and in supporting the development of vaccines and then successfully lobbying to make them available to all Australians this was a fair question. But an easy one to answer. Yes it is still relevant.

In Australia we still have two vaccines which need to be made available Australia wide on the free vaccination schedule, there is still much lobbying to be done. We have doctors questioning parents decisions to vaccinate against diseases not on the vaccination schedule so therefore greater meningitis awareness needs to be increased within the medical community.  No parent should vaccinate their child without considered thought but we are hearing repeated reports of some disturbing discussions happening in doctors surgeries. I, myself, have had a few.

Then there is the need for awareness of the signs and symptoms. As each generation of parents comes along they need the information the previous generations before have benefited from. There will always be people who chose not to vaccinate and those who can not be vaccinated for various reasons and even though we strive for herd immunity, with vaccinations, there will eventually be outbreaks of diseases such as we have seen with whooping cough in recent years. Add those factors to our transient world population moving diseases around the globe and you can never be nonchalant. The cost to our future children is too high.

There is also the need for support for affected families and meningitis sufferers. Where else are you going to find the understanding and comfort needed than with those who have walked in your shoes. So yes, the Meningitis Centre is still very relevant and will be well into the future.

So in this, the Meningitis Centres 25th year, I would like to raise a glass to Bruce Langoulant and all the professionals, parents and families who have worked alongside him over the last 25 years to save our children. Bruce didn't set out to only save children from contracting Pneumococcal Meningitis, which affected his family so devastatingly, he set out to save everybody, everywhere from ever encountering the devastation of Meningitis. Thank you Bruce for never giving up the fight, 25 years is a very long time and it's been a long road. You truly can lay down your head each night in the knowledge that you have made a difference and your legacy will live on forever. Parents across Australia tuck their children into bed each night blissfully unaware of how lucky they are that you have made a difference. The vaccines were too late for Ashleigh and Cameron but knowing that others are not living our lives makes it just that little bit easier to live with.

Happy Birthday Meningitis Centre Australia and all our friends in the Meningitis Community.