I write this on behalf of my ten-year-old son, Matteo. He has had Episodic Ataxia Type 2 since birth. It has caused severe episodes of vomiting, nystagmus, ataxia, migraine, hot spells, and vertigo that have been so debilitating for him. These episodes come on easily and sometimes without an apparent trigger. They last between one and three days, taking huge chunks out of his, and our, lives.
It is so hard to see him suffer through these attacks and watch others around him run, play and effortlessly enjoy life while he sits back on a bench afraid that, if he joins, he will experience an attack.
A diuretic drug called acetazolamide has helped reduce the episodes, but he is still left with a crippling fear of what is to come. For example, even a short stroll around the neighborhood is too much for him. I hate seeing him suffer this way and wish I could take it all away.
Through all of this he is a bright, caring, kind, hilarious, sensitive person who makes it through, showing resiliency and bravery that I have a hard time even expressing. I am so proud to be his mom and I pray that these intermittent attacks will become a thing of the past for him and all of the other people who suffer with illnesses such as this.
May I have the strength and positivity to see him through the hard times and be a support for him for many years to come. - Christa Janes, New Westminster, BC
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