If Amber-May couldspeak
What would she say?
My mum and Dad had no reason to think anything was wrong. Then I surprised them (especially my Dad, hee-hee!) by coming a month early. I was making a lot of fuss straight after I was born, and a whole team of nurses & doctors showed up. I was popular! Before mummy could have a cuddle, they whisked me away to Intensive Care as I was seizing and not breathing as I should.
I couldn’t be picked up or held until day 10..!
Then would you believe it, they wrapped me in an a cold water suit and cooled me down for 72 hours, in the hope my brain might heal. There were leads and probes just about everywhere you looked. Oh, and lots of beeps too. It wasn’t until day 10 that I could partially see, feel and smell my mummy and daddy as I laid in their arms – that was hard, and even tougher for them.
The doctors said I had brain damage and Cerebral Palsy – that means I can’t move my body properly. I also have seizures which make me very scared. I often go to see my friends at hospital, and am a frequent traveller in a bright yellow van with flashing lights, especially in the middle of the night!
Two strokes changed everything…
I could smile once, and giggle (I was very ticklish under my arms!). But then things changed – I had two strokes when I was just over 1 year old. For 3 months, I lived in a hospital opposite the Houses of Parliament. I have never been the same since. I would love to be able to smile and laugh (my mummy and daddy really are a pair!), but I can’t very often now.
After months of tests – the doctors have said I have a rare genetic disease called ‘CACNA1A’. I have the disease particularly badly, There is no cure. So, I just want to be as comfortable as I can and join in and be part of my family as much as is possible for me.
There are things I love to do…
My food goes straight into my tummy through a tube, as I can’t swallow safely. I can’t see much, or hold up my head for very long. I will never kick a ball, ride a bike, or climb a tree. But there are things I do love to do – knocking my bells, playing or just relaxing in water, feeling different textures, touching animals fur, and trying to play my keyboard! I love people singing to me and cuddling me.
There are times when I get so scared, confused, and my brain hurts – I get very sad, and cry and scream for hours – sometimes days on end. I know this is very upsetting for my Mum & Dad and my sisters, because even my strong drugs sometimes don’t make any difference. I wake my sisters up at night and they get tired. My biggest sister sometimes has to do exams which isn’t very good if you are tired. My alarms beep and wake people up too.
I need 24hours care and a team of lovely nurses come and look after me some of the time, so my Mum and Dad can get their beauty sleep. I sleep in a huge special bed in the lounge – it goes up and down and tilts – how cool is that!
I am getting heavy now and need my home to be changed for me…
I am now over 5 and becoming very heavy. I am too heavy for the nurses to lift and bath me already – So, I now need my own special bedroom and wet room and a funny looking thing that I sit in and then I get a flying trip across the room (I like that!). This will mean so much to me, Mummy and Daddy and my caring sisters.
Can you help me please?…
See my life story in a summary timeline…