Chloe - She's always smiling

Chloe was 9 months old when she had her first stroke.

I noticed something was wrong when she seemed very distant; her left arm was limp and she wasn't using it. At the time I had no idea what was wrong; I thought she'd hurt her arm while playing.

I took Chloe to the A&E at the local hospital. The doctors X-rayed her arm but found nothing wrong. She was taken to the ward where other doctors checked her; they were baffled because Chloe was fine in herself, laughing and playing. I was very confused and it was awful not knowing what was wrong with my little girl.

She was later referred to Leeds General Infirmary (which is our region's neurospecialist department) for further tests. When we arrived Chloe had convulsions and I became increasing frightened; I didn't know what to do to help my baby. She was taken for a CT scan which showed signs of a possible stroke; I just couldn't understand it - I'd never heard of anything like this happening to such a small child. After a week she seemed a lot better and so we were allowed to go home. Chloe was able to do all the things she had done before, apart from use her left arm.

A month later on New Years Eve 1998 she was clearly unwell again. She was vomiting and crying as if she were in pain; I rang for an ambulance. When we arrived at the hospital Chloe was having convulsions. She was monitored and given medicine to try to stop them. It was heart-breaking, she looked so sad and scared, she would move her eye's, but wouldn't look at us.

She was referred back to the LGI and after more tests the consultant said that it was possibly encephilitus and that she might not even survive! Then she suffered another stroke ! This stroke did a lot more damage. Chloe's right leg had been badly affected and her body was like that of a new born baby - she just couldn't hold up her head without help.

We stayed at the LGI for 5 weeks and Chloe had a lot more test's to find out why the strokes had occurred but they showed nothing. Then Chloe had an angiogram. This showed that she had a rare disease called Moya-Moya; Moya-Moya is a Japanese term which translate's into English as "Cloud of Smoke", which is how it shows up on the angiogram.

It has been 14 months since Chloe's second stroke; she is two years old now. She takes 1/2 an aspirin a day and goes to physiotherapy once a month. She still can't use her left hand but she wears a splint to help this. She has learnt to sit up again and also rolls around; she can also do a few step's by herself and walks really well in her walker. She is doing good!

She recently started at a special needs nursery which she very much enjoys, the carers say she is doing well. At the moment Chloe is on the waiting list for surgery which I am hoping will help to stop any further strokes occuring. Whatever Chloe has gone through in the past doesn't seem to bother her at all, she's always happy and she's always got a big smile for every one she meets.

Thanks to Chloe's Mother for sending in her profile. Anyone else who would like to share their story can send it along with a photograph (if you're not shy!)

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