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 I am writing this in February 2004 and Natasha was diagnosed in April 2000 so my memories may not be exact.

 This is a bit of background about Natasha, a bit about my feelings. My Apologies if it’s a little jumbled.

 Natasha wasn’t the easiest of babies she had trouble keeping her milk down and would often bring up whole feeds. Then as she got older it became apparent that she suffered from Asthma, she was hospitalised for sever attacks on a couple of occasions. She had a very bad year between her 1st and 2nd birthdays and developed pneumonia twice over that winter. After that her worst asthma attack’s seemed to happen around our spring time during September and October we would often end up at the emergency doctors late at night during these months.

Natasha at 4 was a beautiful petite little girl she weighed approximately 17 kilos, she was quite tiny for her age. Natasha’s little sister Alexandra is 2 years and 5 moths younger and although she loved her she was a bit jealous. This I think is why we missed a lot of the first symptoms.

About Oct/Nov of 1999 Natasha developed a strange rash on her upper thighs and her cheeks she basically looked like she had been slapped but the rash was dry and itchy. We took her to the doctor who diagnosed eczema and prescribed a hydrocortisone cream. The cream didn’t appear to help at all if anything the rash appeared to worsen.

By the New Year Natasha’s whole personality had started to change. She didn’t really want to play anymore she liked to sit and watch TV or just sit doing nothing.

Alexandra being only young would always be in a pram when we were out and Natasha would be walking, I thought when she was complaining of having sore legs that she just wanted to be carried or she was jealous of Alex. I asked my friends with young children and they said their eldest children did the same it was normal so I assumed she just wanted attention. At home we had a flight of steps and Natasha would refuse to climb them, sometimes she would sit at the bottom crying, I would have already run up and down carrying Alex and any shopping and not want to go down again. I couldn’t see why a perfectly healthy four year old shouldn’t be able to walk up steps and not play up. She would sit at the bottom and cry, so most often because I couldn’t stand her crying I would go down and carry her up, but I still thought she was being naughty. I hate to think back to when I would get angry with her for being lazy and make her walk up by herself. Gradually she started getting worse. I had gone back to work by this time and we had a lovely Nanny, Sarah who came in the mornings to look after the girls. She was fantastic with them and they loved her. Sarah started commenting on Natasha’s lack of enthusiasm to do anything like walking up the road to the park, riding her bike etc even if the TV wasn’t on all she wanted was to sit and do nothing. She started complaining about having a sore back and had to sit on a chair at Pre School.

 I took her to the doctors so many times for different things I just knew something was wrong, that all that was happening wasn’t normal. Most of the time I was told it was probably a virus and she just wasn’t feeling well. I asked many times about all of the symptoms that I now know so well, the rash, the fact that she was depressed (How can a 4 year old be depressed?), not riding her bike or climbing stairs.

When she started needing help to get off the ground I requested a visit to a specialist. My GP sent off a Letter to “West Kids” at Waitakere Hospital. We waited but heard nothing and Natasha was getting rapidly worse. My Mother managed to get us an appointment with a private paediatrician at Ascot a Hospital in Greenlane.

Dr Watt was fantastic he examined Natasha and new almost straight away what the problem was, this was the first we had ever heard of Dermatomyositis. He said that tests would confirm his diagnoses and he would contact Starship hospital to get us an appointment. That was on the 4th of April 2000 by the weekend Natasha could no longer sit unsupported she was rapidly getting weaker and weaker. We couldn’t wait to hear from Starship any longer so we just showed up first thing on Monday morning at the emergency department and said “ Our daughter can’t even sit up by herself you have to do something now”.

That was the 10th of April 2000.

Since then as you can see by reading the timeline it’s been an on going battle. Natasha has relapsed a couple of times once when we finally thought she had beaten it and was off steroids and other times she has relapsed for no apparent reason.

We had hoped this would be all over by now but Natasha is wonderful she tries not to complain, which can be a problem in itself as we really need to know if she is having trouble with anything so we can get onto it and sort it out. Every time she say's she's tired or that her legs hurt I think to myself, oh no not again. But we are pretty aware of her now and usually know about a relapse even before her blood test results change.

She say's she doesn’t like being different and now that she’s getting older the other kids are noticing things more, although her school and teachers are pretty good at looking out for her and making sure the other kids look after her as well. Its heart breaking whenever she say's somebody has been teasing her. She has become very aware of her body she worries about her weight because the steroids make her swollen and her stomach sticks out. Also her legs and arms are quite hairy this is something she is very conscious of and she will not wear shorts or short skirts. She said last year nobody teased her about her hairy arms and when we said that was good she said it was because she always kept her jumper on. We have told her that it's the steroids and not her and that when she is off the medication most of the side affects will go away but that doesn't really help right now does it.

She once said to me after making a wish when blowing out her candles.

“Do you know what I always wish for mummy? I wish I didn’t have dermatomyostitis I wish I was just like everybody else” I had to look away so she didn’t see my tears.

I'd like to say a big thank you to Natasha's fantastic Nana's, Uncle's, Aunties and Cousins for all their love and support. They have all been a great help over the years and provided somewhere safe for Tasha to be where we knew she wouldn't hear any negative comments, just receive heaps of love.

Sharon

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