Living with cerebral palsy

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  • The minute Rachel was born I knew there was a problem. I found out that she had suffered from a brain haemorrhage during the pregnancy.

    Doctors always say that you never know what sort of damage this can cause, but Rachel was unlucky in that sense.

    After seven weeks, she had to have a valve put into her brain to stop fluid build-up, a condition called hydrocephalus.

    We also discovered she had cerebral palsy, she was blind and later on learning difficulties.

    I imagine most people would have been devastated, but it wasn’t like that for me. I’d already suffered a miscarriage and also given birth to one stillborn child, so having a living baby was wonderful.

    I was overjoyed to have Rachel – my husband John and I wanted her and loved her from the moment she was born.

    Everyone has a plan in life, and Rachel’s arrival and illnesses just meant we had to take a different road.

    I learnt early on that having a routine was one of the best things for Rachel. I made sure we went out every day, even if it was for a walk. In fact, the worse the weather, the more she enjoyed it. She also went to a special school for the blind with special disabilities.

    When she was 20, she moved into a bungalow with 3 other woman and has 24-hour supported care. We still take her on holiday ever year and I go shopping with her most days.

    Yes, her life has been different to that of an able-bodied child, but it’s just something you adapt to.

    There’s no denying that it is a traumatic thing to cope with, but you just need to get as much support as you can. Go looking for it and grab whatever you find.

    My advice to anyone out there in the same situation would just be to live day by day.

    Knowing that Rachel is happy and has every possible opportunity makes me happy – simple as that.

    Sandy, 61, and Rachel Collington, 35, both live in Cornwall

    Scope is a disability organisation whose focus is people with cerebral palsy, and whose mission is that all disabled people achieve equality in the UK. Scope’s mission is to drive the change to make our society the first where disabled people achieve equality. Our Time to Get Equal campaign aims to build a mass movement of one million people to help achieve this. To find out more visit

    Where to next?

    More information about cerebral palsy
    Ohtahara syndrome explained
    Professor Alan Colver on discovering your child has cerebral palsy