Rett Syndrome is a cruel disability that is present but invisible at birth. I started to learn to walk, talk and feed myself meeting my developmental milestones until Rett Syndrome started to kick in and my first regression began. Rett Syndrome steals the hopes and dreams of the parents alongside the skills of the child. I can no longer walk or talk, have epilepsy and scoliosis.
Here are a few facts about me:
1 I need care 24/7 for everything and will never be independent.
2 I spend most of my time in specially adapted chairs.
3 I cannot tell my mum or dad when I am in pain, I can cry and then they have to try and guess what is happening to me.
4 I cannot play normal games with my sister or friends and I cannot go out and play like other kids.
5 I have a tube in my belly to ensure I get enough food, water and my medicines. I still enjoy eating, but I dont always manage to get enough.
6 I have to wear splints on my legs to keep my ankles in the right position, they are ugly and uncomfortable. Why can't I have pretty ones?
7 My mum and dad try their best for me, but my shopping list is never ending, there are things that I need now and things that I will need for the rest of my life. The special needs tag means that the costs of everything rises dramatically.
My mum and dad are trying to raise funds to turn my bedroom into a specially adapted sensory room, where I could learn to play and have fun safely.
I cannot talk, but I can hear you, I know what is happening and I am very good at communicating with my eyes, they are the window to my life.
Welcome to Cassies World, any donations would be gratefully received.
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