Hi, my name is Maddieson Louise Button. I was born in Alice Springs on a beautiful day in July 1997 just as my mum Kylie and my dad Luke were getting ready to go to a wedding.I was 10 days overdue and chose the perfect time to enter the world. My dad was driving the bride to the ceremony so mum had to wait in the car at the wedding venue for dad to tell him it was time, and as things would have it he arrived 'fashionably late' with the bride.By this time my mum was swearing.My mum was getting rid of the high heels, scrubbing the makeup off her face and untying her hair mid labour to make herself feel more comfortable. She was also very hungry when I entered the world because she had been saving her appetite for all the lovely wedding food. I was born very quickly. Only 3 1/2 hours from my mum thinking she had wind pain to when she held me in her arms for the first time. Neither mum or dad got to see our friends get married.
I developed normally for the next 10 weeks, although my mum did notice me turn purpole a couple of times while she was brastfeeding me. The doctors said it was just wind. Then my mum and dad noticed me having tiny jerking movements of my arms and my eyes rolling back in my head. The doctors started taking a whole lot of notice to what my mum had been saying and I was rushed interstate for a battery of tests and I was diagnosed with Aicardi Syndrome.I had uncontrollable seizures for the next 4 years and was on a huge dose of Vigabatrin twice a day. Around the age of 4 1/2 my seizures decreased and almost stopped altogether. Since that day I have been surprising everyone. I now live in Darwin and my mum and my stepdad Tony and my dad and stepmum Barbara take turns to look after me. The doctors said I would probably never walk, but I proved them wrong and I can run, ride a horse, climb and generally get into everything I shouldn't.It took me a while but by age 4 I was off and the world is now my oyster.
I have an uncanny knack for sniffing out mischief. Even though the bathroom cupboard is off limits to me I ALWAYS find a way to circumvent the locks and I enjoy nothing more than to squelch around in a puddle of expensive shampoo. The fridge is another of my favourite places to seek out tactile stimulation. One day I got more than I bargained for and what looked like a lovely pale green sticky goo just begging me to dabble, turned out to be wasabi. I have put many non edible substances into my mouth, and I think the people at the poisons information centre know the names of my family off by heart. Many times I have escaped the confines of my house and yard and nearly given my parents a heart attack. I keep the police in Darwin on their toes. Despite my parents best efforts to keep me safe I am very active and a lot smarter than people give me credit for.
When I was almost two I said mummy a couple of times, and I used to say no and dad, but I have since stopped talking. I still get my message across clearly though. I can grab a persons hand and I lead them to the object of my desire. If I am unhappy or hungry I can yell and cry really loudly and I can throw a killer tantrum! My mum just shakes her head at me sometimes. I am not toilet trained at all, yet my brothers taught me to burp really loudly and I can deliberately swallow air and let rip half a dozen in a row. I think its hysterical and laugh uncontrollably but my parents dont think it is, especially if we are eating out in public.I enjoy my food now and can feed myself with assistance, but I went through a period of 3 months at about the age of 2 where I stopped eating altogether. I lost a lot of weight and was put in hospital. On the third day my doctor told my mum and dad that I would have to be parenterally fed and would probably never have the inclination to eat normally again. My mum was beside herself. On the day I was due to have a naso gastric tube in situ I stared eating again. I think it was the hospital food. Mighty good tucker.
I will be 10 next month in July 2007, and my seizures have come back. My parents are very worried as I am on the highest dose of anti seizure drugs that my body can tolerate already. I am on Sodium Valporate, Lamotragin and Levatiracetim. The doctors took me off Vigabatrin a while ago because of the danger of it damaging my sight. My seizures are becoming worse and I am a lot more irritable than I used to be. I typically wake at 5:30 am and make a lot of noise until someone puts my Wiggles video on. I have 4 brothers and 1 sister and this can make mornings very tense for the rest of the family.
Anyway, my mum would love it if you could email her and share your experiences with your own special little girls. Im sure you will have a lot to talk about.
Bye for now xx