Kevin was living a normal life until a sudden diagnosis turned his family’s world upside down.
Originally from Canada, and one of 13 children, Kevin was the only member of his family to travel to Australia. When he met his Australian wife Sarina, he made the move to the other side of the world for love. He and his wife welcomed their beautiful baby boy into the world on their first wedding anniversary. Back then Kevin was working as a teacher in Information Technology and Sarina worked in a law firm, while their son was at school.
One day, as Kevin was helping some of his students to open their own computer store his life changed forever.
“I went to pick up a marker to write on the whiteboard and I couldn’t pick it up. My hand wouldn’t close or grasp it. I thought it was strange but that I must have just needed a coffee,”
“I went out to the front desk where the guys I was working with were. I went to pick up a pen and help them with a customer that was bringing in a computer to be repaired and I couldn’t pick up the pen. I said to them, ‘I think I’m having a stroke’.” – Kevin
Kevin immediately went to his doctor, who jumped onto it right away. To Kevin’s surprise, it wasn’t a stroke at all. His doctor sent him for a CT scan, and when that came back with nothing, he ordered him an MRI and Lumber Puncture test. These revealed that Kevin had lesions on the left frontal cortex of his brain.
For Kevin, the sudden and final diagnosis was Multiple Sclerosis (MS).
What started as a lack in grip strength progressively worsened at a fast pace. The first attack targeted Kevin’s Hypothalamus, which controls motor function. The other lesions greatly affected his memory and reasoning. The changes for Kevin were jarring; where previously he had been a teacher with a near photographic memory, overnight he was left with much more limited mental capability and limited strength in his arms and legs. For him, the diagnosis was career ending.
The diagnosis then triggered a flow of follow-on effects for Kevin and his family. Being unable to work meant that the family were thrust into financial insecurity and needed to sell their home and draw on their super to survive. At such a young age, Kevin had only amassed a small amount of Super to live on which did not last very long. As Kevin progressively worsened, he and his wife Sarina decided that she would transition into being his full-time carer.
“We went from having good income down to having really, really bad income and no savings.”
Now Kevin and his family live in a disability accessible unit through the Government. Due to the nature of the funding models, he often finds himself stuck in the cycle between Department of Housing and the NDIS when it comes to funding the extra items, he needs to make his life bearable.
“If we owned our own place, and I needed a new kitchen, I could get money in my plan to modify the kitchen. But because we’re in a housing unit, I get nothing. The same thing happened when we moved in and there was no air-conditioning, which is what brought me to Youngcare.”
Air-conditioning is essential for Kevin’s quality of life as the lesion in his hypothalymus inhibits his body’s ability to self-regulate body temperature. Along with MS, he also suffers from Aquagenic Pruritus which means that he is ‘allergic’ to water and becomes incredibly itchy when he sweats. To try to mitigate the problem in the short term, Kevin bought some small portable air-conditioners. Whilst these helped to some degree, they were an expensive fix and meant that Kevin was confined to his bedroom during the Summer months as they were not powerful enough to cool the whole house. As a family, they could not entertain or enjoy time together in the lounge room or kitchen.
He had permission from the Department of Housing to put in air-conditioning, but with both income earners on pensions their financial situation did not allow for them to fund the air-conditioning on their own. Kevin applied for an At Home Care Grant of $4,850 to provide air-conditioning throughout the house to allow for his mobility and freedom to move around his own home.
“When I got the letter to say I got the grant, you have no idea – I was basically in tears, thinking ‘oh wow, I’m actually going to be in my living room’. That’s where I’m sitting right now and it’s nice and cool in here and I’m not sweating. We can have guests come over, I can sit at the kitchen table, I can have the oven on, I can cook with my wife. The temperature is controlled by the air-conditioning,”
“It has taken me from being a prisoner in my bedroom to allowing me to use the rest of my house!”
Kevin has lived with his MS diagnosis for 15 years now. Typically, after the ten-year mark, an MS sufferer is expected to have a steady decline, however Kevin is still relatively strong. The little things, like air-conditioning can make a huge difference to someone with MS as they manage their condition.
Thank you to Suncorp and the generous supporters of Youngcare for making the grants possible.