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30/01/2020

My life with Lottie

By Finn

My name is Finn and I am 10 years old.  I play football for Royce Rangers and I support Manchester United.  I like Lego, Star Wars and playing Forza on my X-box.  I live with my Mum my Dad and my little sister Lottie who is 8. Lottie is funny and mischievous and she has Rett Syndrome.

My friends at Reverse Rett asked me if I would do a blog for young carers day and I said yes.  At first, I wasn’t sure why they had asked me because I didn’t think I was a carer, but after talking to my mum and dad and thinking about it, it turns out I am.

I don’t remember when I first knew that Lottie had Rett syndrome.  I do remember she was always different.  Sometimes it frustrates me that she is different and I can’t do the same things with her that my friends can with their brothers and sisters. 

I would like to be able to play football with her in the garden, or Lego, or play with her on the X-box.  Lottie is usually with me when I am doing these things though and I think she would like to do them too.  We never fight.  Sometimes when she is sad, I am the only one who can cheer her up.

It’s hard to describe how I look after Lottie, but my Mum says I do lots of things.  I always make sure the front door and gates are locked so she is safe.  When we are out, I hold her hand if we are near a road and I always make sure she is on the inside of the pavement.

I am always the one who catches her when she runs away in the supermarket, which she does all the time.  She’s pretty quick but I am quicker. 

I wipe her face when I am sitting next to her in the car, and unwrap her snacks, and make faces for her so she sits still and laughs when my mum is doing her hair.  I don’t mind doing any of those things.

There are some things I would like to do that I can’t do because Lottie has Rett Syndrome.  I would like to spend as long as I want in the swimming pool when we all go together, or for all of us to go to the cinema together.  I would like to go on a long walk without the buggy, or to be able to stay out late on our day trips.

Sometimes I feel like I am different from other kids because we have Lottie. Last year I made friends with another boy who has a sister with Rett Syndrome.  He is also 10, and our birthdays are only 2 days apart.  His sister is 8 too.  He was really nice and normal and not different at all and now I don’t feel so different.

This year my school has chosen Reverse Rett as their charity and we are doing loads of fun things to fundraise.  My mum and I did some talks for year 5 and 6 and I told some funny stories about things Lottie gets up to and what it is like being her brother. 

Now all the kids in my class understand a bit better about Rett Syndrome and how it affects families.  I think it really helps when people understand.