Recently my wife and I attended the Hurstbridge Wattle Festival. Which has become a favourite of ours, these past few years. This is an annual festival held in August. There are many stalls, drinks and food options, spread across a large area. There are buskers as well. Which is usually a mix of high school bands, and older musicians. Next to some old cars on display, was a stall very different to the rest.
This stall was run by a couple. They were there, raising money to find a cure for their young daughter Sienna. Their daughter, at age three, had been diagnosed with a rare neurological condition, called MCOPS12. Sienna’s parents were also fund raising to pay for their daughter’s therapies and associated medical expenses. The condition, so her mother explained, is degenerative, which means it gets worse over time. Their daughter is now five, but they do not know how much longer she’ll live. It could be decades, or it could be a few months, they just don’t know.
This specific condition is unfamiliar to me, although I do know some stuff about it. Sienna’s condition, as well as many others, are collectively referred to as childhood dementia. There are many different types, but they all share some common traits. Such as, the fact there is no cure for any of them. Children typically show symptoms when they are toddlers, though they can be older as well. It is common for these conditions to be misdiagnosed as epilepsy because the symptoms are the same. After a diagnosis has been correctly identified, those children eventually lose their speech, mobility and memory. All the types of childhood dementia are terminal and life expectancy is always quite short. As it happens, I have a connection to these diseases, albeit, a very loose one.
I remember there was someone with one of these conditions, at my primary school. A boy, I remember seeing him looking normal and then I didn’t see him for a while. The next time I saw him, he was in a wheel chair, he was deaf and blind as well. I didn’t see him very much, but when I did, he always had the same blank expression on his face. Then, when I was eight years old, I found out about his younger sister, who had the same condition as him.
It was 1999, and I was attending weekly physio, at the Royal Children’s Hospital. As it happened my physiotherapist, was the same one who also saw the boy in the wheelchair and his younger sister. My mum must have told her what school I went to, because I can remember the day my therapist greeted us, holding a newspaper article. The article explained, that the boy’s younger sister, aged three, had passed away from this neuro-degenerative disease. Now, I was very young at the time, but I still clearly remember the wording. His sister had taken a few short breaths, until she breathed her last, dying in her mother’s arms. I don’t know when her older brother succumbed to it as well, it could have been shortly after her, or years after, I don’t know. So that is why, when I see stalls like a Cure for Sienna, I have even more sympathy for what the parents must be going through. Outside of that, there was another person I was following through social media, in New South Wales. Her name was Angelina Lati, she was fourteen when she was diagnosed with Lafora Disease, which is another form of childhood dementia. Her mother was making regular updates about her daughter’s condition. Angelina passed away this year, the age of 21. Maybe one day, there will be a cure.
Cure for Sienna has a Facebook page: https://www.facebook.com/acureforsienna/
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