‘He’d take Jordan down to the beach as a toddler and he loved the attention that would bring.’

George Kostakis was a larrikin. Always up for a laugh, he loved football, great food and his precious family. When he didn’t show up to his grandson’s football training or matches, his family knew something wasn’t right.

‘He didn’t want the kids to think he was drunk, so he just stopped coming.’

George had started falling over. Soon, he was in a wheelchair and had lost much of his ability to speak and swallow. He had bowel and urinary issues and was fainting. George was diagnosed with Multiple Systems Atrophy, a cruel degenerative brain disorder related to Parkinson’s disease that impairs and eventually destroys the body’s functions. Patients are confined to bed within five years and death results within nine.

There is no cure, effective treatment or government funding for research.

You can help.

When you give a gift to NeuRA, you’re helping someone with Parkinson’s disease or dementia. You’re helping a child with autism, an adult with sleep apnoea or preventing falls in the elderly.

You may even be helping someone you love.

Thank you. Together we will Discover, Conquer and Cure.

 

When you think of your family and friends, who is the person always up for a laugh or always greets you with a warm embrace?

For the Kostakis family and their friends, George – husband, father, grandfather and mate – was that man.

Have you got friends that go way back in your life?

George’s generosity and larrikin spirit meant people were drawn to him.

‘He’d often take Jordan (now aged 21) down to the beach as a toddler. He loved the attention that Jordan would bring, calling Jordan his ‘chick magnet,’’ Laila, George’s daughter, remembers with a smile.

Football was his passion. Coaching his grandson’s football team was the highlight of his week.

‘Pappoús (Greek for grandfather) taught us to shake hands at the end of every game; to help someone up when they were down; and win or lose, to enjoy a game played well,” Jordan and Jamie (now aged 19) both reminisce.

‘Whenever the kids laughed, he would laugh.’

When babysitting his grandchildren he didn’t notice the storm of messiness they created, or waste time on bedtime rituals. They were too busy playing, and he wasn’t scared to show them how much he loved them, often ‘gently chewing on their elbow funny bones’ or blowing raspberries.

When he didn’t show up for football practice, his family knew something wasn’t right.

Falling was just the beginning.

George was rarely unwell… fit, healthy and never smoked. That all changed around his 55th birthday. George had started to fall over and slur his speech. It embarrassed him, and he couldn’t explain it. He withdrew from those he loved.

 ‘It took more than seven years to understand what we were battling.’

Like so many neurological illnesses, ‘joining the dots’ takes time.

Finally George was diagnosed with Multiple Systems Atrophy (MSA).  It explained everything.

‘After so long not knowing what was happening, the diagnosis finally made sense, and we learnt to live with it. We spent lots of time with him – feeding him his favourite foods, talking about our week or the fickle politics of our time. The kids would talk about their adventures, watched football, and read him the newspaper. Life had changed. But the man was still the same – same sense of humour, same interests, same passions. It was only at the end of his life that we discovered just how much he also treasured this time,’ Laila recalls.

Multiple system atrophy – the cousin of Parkinson’s disease

MSA is a degenerative brain disorder that impairs the body’s functions, including blood pressure, heart rate, bladder function and is related to Parkinson’s disease. The cause of MSA is largely unknown, and affects men and women equally. It begins primarily in people aged 50, although it can strike as early as 30. The progression of the disease is rapid and patients are confined to bed within five years, and death results within about nine.

There is no cure, effective treatment or no current government funding for research.

You can help, with a gift today.

NeuRA’s research in MSA is led by Dr Scott Kim and Professor Glenda Halliday. Thanks to your support, our research has been instrumental in determining how the illness progresses. Now, and with your gift, NeuRA aims to:

  1. Better understand the changes in the brain of people with MSA
  2. Investigate the role of genes in MSA disease process
  3. Identify molecular targets that could potentially lead to developing therapeutic treatments for MSA

Achieving these will lead to better health outcomes, through earlier interventions and targeted treatment plans.

When you give a gift to NeuRA, you’re helping someone with Parkinson’s disease or dementia. You’re helping a child with autism, an adult with sleep apnoea or prevent falls in the elderly.

You may even be helping someone you love.

 ‘We remember Dad for the person he was, not the disease that took him.’

The last few years were exceptionally difficult. Every meal was an adventure. Food that he enjoyed had to be prepared in ways that he could swallow. He could no longer move or speak. His crippled body failed him. He suffered but up until his dying breath, fought with all his strength.

The night he died, he opened his eyes and signalled for the boys who were leaving to come back… he must have known his time was up. They hugged and kissed him one last time. He died a few hours later. He was 65,’ Laila remembers with a tear in her eye.

With the end of the financial year upon us, will you help with a gift today so that one day boys like Jordan and Jamie won’t lose their grandfather in such a horrible way? Or perhaps you’d like to become a regular donor, and help See it Through to a Cure by making a monthly donation.

‘Hope without science is calling on a miracle. For genuine hope, we need much more research into MSA, to ultimately find treatments and cures for this unforgiving disease.’