by Gwen Payne One of the most important decisions that any parent makes is how to educate their child. This is especially true of parents with special needs children, who often require specialized curriculums and alternative learning environments. Whether your child’s special need is physical, developmental, behavioral, or sensory (visual or hearing impairment), it’s vital that you weigh all of your educational options to determine which one is right for your child. Here are some things you should consider when making decisions about your child’s educational needs. Public or Private School? B ..read more

My name is Caitlin Maynard, and I live in Sydney, NSW.  I was born in Somerset, England in 1995, and have lived all over the world since then. I moved to Sydney in 2018 with my parents and boyfriend and immediately loved how friendly and accessible it is here. I was diagnosed with Friedreich’s ataxia in 2013, after showing symptoms for a little over two years. The appointment where I was told my diagnosis was the first time me and my family had heard of FA. I was diagnosed a few months after I graduated from high school, and one month after I started university. The shock of being diagnos ..read more

I was an active and joyful 16-year-old when I first noticed my co-ordination changing. I lived in Adelaide, South Australia. I played a number of different sports at the time and would often walk the 4-kilometre trek to school. This is when I would feel my legs not moving properly but the change was so tiny that I did my best to not think about it. Nobody in my life had picked up on the change so how bad could it be? Fast forward 3 years and I was studying my last year of my diploma in outdoor recreation. I was leading a very active lifestyle. I was completing 80 kilometre bushwalks on the reg ..read more

Hi, my name is Kerry Benson and I live in Adelaide, SA. I was born in 1967, and I am married with two adult daughters and we have 5 Grandchildren. I was diagnosed with Friedreich’s Ataxia (FA) at 31 years of age. When I was 25, I had the flu (most likely the trigger point) and after that I noticed small things changing over time. First, my balance was gradually getting worse and I was finding playing sport, and to the point - running more challenging. Over a period of 6 years I would mention small things to my GP but often had my queries pushed aside. It wasn’t until my speech started to be af ..read more

At the age of 16 (in year 10 at school), I was running downstairs, tripped over and broke my leg. After six weeks in plaster, recovering my mobility with the aid of crutches, I found myself in the rooms of a Sydney physician. Hypothesis formed as to what was happening to me. I was upset at what he told me. I was not one to be told what I could or could not physically do. This was particularly the case as I had previously excelled in a wide variety of sports. I should have followed his advice although my judgement at the time was clouded by youth, my athletic background and competitive schoolm ..read more

I was a happy, healthy child living on the Gold Coast, Australia when my sister, who is 18 months older than me, started having trouble walking. We would regularly walk the few blocks from our house to the Broadwater and her unsteady gait became more and more obvious. My mum, determined to get to the bottom of it, took her to several doctors. When I was 10 years old the diagnosis was confirmed and my parents were devastated. Neither my sister or I understood why our mum kept crying - so what if my sister was going to get a wheelchair one day? Wheelchairs are fun! So what if the doctor said she ..read more

My diagnosis story…the easy bit. Compared to most, my diagnosis was very quick and easy. It all started when I was 17. 19 years ago. I felt a little unsteady on my feet. Prior to this time, I didn’t really have any symptoms. In the November of 2000, I went to my GP with my mum, suspecting that I had an ear infection. My GP soon realised that this wasn’t the case. He did a few basic neurological tests and knew there was something more. My mum mentioned that a distant cousin had a condition called Friedreich Ataxia. My  GP told us how rare this was but referred me to a neurologist anyway.  I wen ..read more

Growing up, there was a question that really bugged me – what was it that I was doing differently to everyone else? There must have been a trick to life in general that I just didn’t get. I kept falling off my princess shoes (heeled sandals with the Disney princesses at the toe, but no strap at the back), I was told off by many for walking lazily (apparently you’re not meant to meander and literally get under people’s feet), I could never keep a grip on the monkey bars, and I couldn’t figure out how to walk up and down slopes without falling over. I was so clumsy and so easily winded doing any ..read more

Everyone’s story with Friedreich Ataxia (FA) is so very different, but the journey to reach diagnosis ends up sounding very similar. Mine started a long time before I was diagnosed five and a half years ago. I had just turned 28 and it was considered late onset diagnosis. By this time, I had had symptoms for probably close to 10 years, maybe even more. It wasn’t enough to investigate at first; I was a clumsy teenager but still played competitive sport. I was actually a very good tennis player for most of my teens but struggled as I got older. I knew I didn’t have to run far and could easily co ..read more

I’m fortunate (probably not the right word?!) to have been the second child in my family with Friedreich Ataxia (FA). I have a brother 10 years older than I who also has it. All the stories you hear about FAers travelling a tough and challenging road to diagnosis, yep, he did that. Doctors recognising that something wasn’t right but not managing to pin it down, he went through all that. You think not enough doctors are familiar today with FA? We’re talking late 80s. Oh and he was in his 30s, a single guy, living and teaching English in Algeria. The FXN gene was still a long way from being iden ..read more