Living with Cerebral palsy- written by Leo

I was born in 2005 (of course I did not remember this because I was a baby), I don’t remember a lot of things but I can remember the day I realised that I was different. I must be about 4 years old back then; all the children near where I lived used to play in the car park and I used to watch them. It made me really lonely and I could not do physical stuff like them. they were running and playing tag or football or riding their bikes. all I could do is sit there and watch out of the window. it’s not fair that every day I had to have physio to make my legs bend and every night my legs would hurt. every night I would go sleep wishing my legs would work when I woke up. it was not only my legs would not work, sometimes my left hand would not work. I also found out that I could not sit up properly. I used to be angry that I could not do the stuff the kids can do and I used to punch my mum. But I felt bad doing that because my mum had to carry me upstairs and lift me into the bath or into the car and I must have weighed a lot. even something that other people found simple like having a shower or going to the loo my mum had to help me with.

the doctors I saw back then did not know if I could walk or stand up. they put botox in my legs to try and help me stand but It did not work, I was scared that I would be stuck in my wheelchair forever. the one day my mum was told about a doctor in America that was doing operations that might just help me to walk but it cost a lot of money. my physio, Jane, helped my mum to make a film to show the doctor what I could and couldn’t do. We sent it off to doctor park and waited…

very soon, my mum had got an email from America saying that he can help me. that made me SO happy!

25 Comments

  1. Nan holland
    6th December 2017 / 4:53 pm

    That is brilliant Leo. Look forward to the next part.

  2. Megan
    6th December 2017 / 5:00 pm

    Hi Leo
    It was nice to read about an older child with CP. My son is only two and we don’t know anybody personally that has CP. Keep up the hard work.

  3. Janet Simper
    6th December 2017 / 5:01 pm

    Leo you are amazing young man.

  4. Erik
    6th December 2017 / 5:06 pm

    Thanks for sharing your experience and feelings. I look forward to hearing more and seeing how SDR changes your life.

  5. Mary
    6th December 2017 / 5:12 pm

    Fantastic my handsome Leo.

  6. Ben Sutcliffe
    6th December 2017 / 5:38 pm

    Leo you continue to be an inspiration to me and everyone at Caudwell Children. Reach for the stars because you can reach them!

  7. Louise
    6th December 2017 / 5:54 pm

    I’m looking forward to reading more! My son was also born in 2005, and has had similar frustrations!

  8. Iona
    6th December 2017 / 5:54 pm

    Don’t let anyone tell you the sky is the limit, when there’s footprints on the moon 💙 Xx

  9. Lisa
    6th December 2017 / 6:15 pm

    Lovely to read this! My daughter Erin who is almost 6 has CP and I often wondere what she makes of it all. Look forward to the next installment. xx

  10. 6th December 2017 / 6:46 pm

    Hi Leo my son is the same age as you and loves blogging too. I love your corner and can’t wait to read more.

  11. Tracy
    6th December 2017 / 8:01 pm

    Thank you for sharing. My son has cerebral palsy too. I love to hear about your experiences to help me better understand what he is going through.

  12. Sarah
    6th December 2017 / 8:10 pm

    Well done Leo, looking forward to reading more. My daughter is the same age as you and also has CP xxx

  13. Sarah
    6th December 2017 / 8:12 pm

    Well done Leo, so brave to share your story. Looking forward to reading more. My daughter is the same age as you and also has CP

  14. 6th December 2017 / 9:26 pm

    Well done Leo.
    My son & daughter also have CP.
    Nathan is 21 and at university studying politics & sociology.
    My daughter is 14 and likes music, arts & crafts.
    They have both written for my blog too.
    Such a great idea x

  15. Una O'Brien
    6th December 2017 / 10:15 pm

    That’s very insightful Leo. Looking forward to the next piece! I will show this to my eight year old son Eoin who has CP as well

  16. 6th December 2017 / 10:33 pm

    Thanks for sharing Leo, My 4 year old Elliott has cp and is awaiting SDR. Keep up the good work x

  17. Samantha
    6th December 2017 / 10:41 pm

    I really enjoyed that. It’s good to hear about cp from your point of view. I look forward to the next one!

  18. Jacky Dunne
    6th December 2017 / 10:43 pm

    Hey Leo, I must tell Kayley you’ve got your own blogspot now so she can come read. She’s so busy with secondary school at the moment so I’m not sure if she’s been in touch with you recently ☺️ it’s great to read your thoughts on your CP. Great idea, writing is a great hobby and you have a talent for it. Love ya Leo!!!

  19. Darren
    7th December 2017 / 7:25 am

    My little girl Freya is 7 and has cp like yourself. Like her you seem a very inspirational young person. Although her communication is delayed she has no difficulties in letting me know what she wants, likes and whos the boss ha ha. Shes due for sdr in the UK in January 2018. She has a facebook page ‘Freya Bailey the speeder bike wheelchair wondergirl’. Keep up the good work Leo. Youre a star

  20. Clarel
    7th December 2017 / 9:42 am

    Well done Leo you carry on and you will inspire a lot of people out there who are like you and wish they could do things with their friends as well. Granddad Chris and I are very proud of you. Even though you are not actually our grandson we look upon you as one. Well done mummy for all your hard work and dedication. You rock

  21. 7th December 2017 / 12:44 pm

    Leo, good on you for finding the courage to speak up and take a little corner of your Mum’s blog for yourself. 🙂

    I love your honesty about your challenges and the little bit of humour in there too. I don’t remember my birth either but I’m told I was very small and far too impatient too arrive!

    I’ve seen a couple of your progress videos over the years, as I had SDR too, but I can’t wait to hear all about your life, in your own words.

    Keep writing Leo. Yours is a story worth telling.

  22. Susan Glaisher
    7th December 2017 / 3:57 pm

    Thank you for telling us about your life Leo. I love watching the videos that your Mum posts on Facebook that show you making steady progress with your physio In Wales. You are an amazing boy. Have you thought about becoming a writer? Looking forward to reading more from you.

  23. Laura
    7th December 2017 / 4:59 pm

    Wonderful. My little boy has cerebral palsy too and it’s helpful to have insight into how it feels for you. Lots of love you amazing little guy xx

  24. Dan
    7th December 2017 / 8:02 pm

    Leo this is lovely to read, there are always challenges in life and you are showing through your bravery and determination that your human spirit is very strong and that if you put your mind to it you can achieve anything you set your heart on. I look forward to reading more of your blogs. What an inspiration you are!

  25. Swati
    16th December 2017 / 10:18 pm

    Thank you Leo for writing this. Please write more. You will help me understand how my little four year old who cannot yet communicate, feels in his CP body. Lots of love and best wishes to you

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