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Thanks for dropping past and visiting my website.
My name is Massimo and I have a really rare (like one in a gazillion) genetic condition, with a long funny sounding name, called Leukodystrophy. All of a sudden, way back in July 2009, I started to lose some basic skills like crawling, cruising, sitting and even talking. I had to have all these yucky tests with needles and go into a huge loud tunnel machine to take pictures of inside my head. It was a pretty scary time but a group of extraordinary people from around the world worked tirelessly to figure out what the hell was going on and to help me overcome some of these challenges.
So… if you haven’t met someone like me before here’s the low down. First, some technical stuff. The word Leukodystrophy comes from the Greek roots leuko (white), dys (lack of) and troph (growth). Leukodystrophy refers to a group of rare genetic conditions affecting the myelin of the central nervous system. Myelin is a fatty covering that acts as an insulator around nerve fibres much like electrical wiring. It’s sometimes called white matter because of its colour. Nerves need myelin to transmit electrical signals and because my body has not produced myelin correctly, my nerves are not able to send messages to different parts of my body to get it do things other kids can do. This means I can’t walk, stand or sit independently but I am doing lots of exercises to regain some of these skills and because I can’t talk I use a special communication app on my iPad.
I love doing most things other kids do, especially singing and reading stories. At home, my twin brothers (Leonardo and Marco) and I love swimming, cars and trucks and playing games on my i-Pad but I don’t really like sharing it with them! Most of all, I love hanging out with other kids at my local kindergarten that I go to three times a week.
Because I can’t always feel my body or tell it to do things like standing and walking, I sometimes need extra sensory stimulation to help me concentrate. To get this, I wear a special compression suit (except on really hot days) and you might see me getting my hands and feet brushed or getting some deep pats and massage. It wakes my body up and feels great! Every now and then I might feel a bit overloaded and may need to leave the room for some fresh air and to give me a chance to reboot. It’s my way of taking three deep breaths.
Almost 50% of Leukodystrophies remain unclassified which really sux because it means there are no therapies available. Fortunately, my dad is really stubborn and leaving me unclassified wasn’t an option. With the support of some amazing people and a few g-nomes they achieved a diagnosis for my condition in 1,161 days. They found a couple of letters in my DNA which were different, and in the process found a whole lot of other kids with the same condition.  Now that my parents have this information they are working with some more ĂĽber clever doctors and scientists to develop a therapy that might help me start making myelin again to get back some or all of the skills I lost when I was younger. This would be a mega breakthrough and has the potential to help many thousands of other children around the world. It could also go on to help people with other conditions like  Multiple Sclerosis.
As you might imagine developing these therapies takes a lot of pocket money. So, with the help of my parents I have established the Mission Massimo Foundation and want to send a few people into space to raise funds. It might sound a little crazy but so did achieving a diagnosis with g-nomes and blue jeans back in 2009.
I hope you will support our mission and help make today’s science fiction, tomorrow science fact.
Commander Massimo “Mo” Damiani