So why can't we do the same for dementia? Why can't they have the same outcomes as children with cancer potentially do?" Megan told Mamamia. "I always look at my nephew who is a beautiful boy in highschool now and think if he was born 30 years ago his outcome would be completely different. It effects children with a death rate on par with childhood cancer, and yet it has no government funding and only five per cent of conditions have a treatment. There are currently an estimated 700,000 children and young people living with dementia worldwide, with many young lives being devastatingly shaped by progressive brain damage, social isolation, suffering and early mortality rates.īut as Megan knows only too well, most Australians have never even heard of its existence, despite there being more than 70 conditions under the childhood dementia umbrella. What they don't get is that we grieve for their whole lifetime. She felt understood and supported in a way she never had before. "One mother I spoke to told me when her child passed away, people could understand her grief. It's a slow and cruel gap between other kids and her kids that will just continue to widen. Megan has had to endure her daughter no longer being able to tell her she loves her, and watch her son's peers start soccer lessons that he will never get to participate in. It's a grief others can't seem to comprehend. Every day you realise something else has been taken from them, and from you," she explained. It may be when I get to it, but what I hadn't anticipated was how difficult daily life was going to be. "But what I didn't appreciate at the time, is that actually is not the worst thing. It was the most awful thing she could imagine. When Megan first discovered what lay ahead, she couldn't stop thinking about the fact that her beautiful children were likely not going to make it to adulthood. Both children have intellectual disabilities, with Sanfilippo slowly robbing them of their mind and body.
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