This month of our anniversary year we are turning the spotlight on family members of people with spinal cord injury and how Back Up supports them.


Just one week after Mark’s daughter Sarah bought her first car and started a new job, a sudden illness left her permanently paralysed from the shoulders down. “We were a normal everyday family,” Mark remembers. “Now I ask myself: what’s normal?”

Beforehand, Mark and his family weren’t aware of the impact a spinal cord injury could have on someone’s life. “We only knew what we saw on television and in the papers,” he says.  As soon as the injury happened, the family felt overwhelmed.

Quickly, they had to make radical changes to their every day lives. Caroline, Mark’s wife, had to give up her job to move to the north of England, where their daughter was hospitalised.. “For a year I travelled every Thursday to join them and returned home on Sunday nights,” Mark says. “The family was split up.”

Sarah’s injury changed things forever. “Our lives will never be the same, we will have to adjust, we’re fighting with life,” Mark says. “There’s a lot going on at the moment and we can only cope with one thing at the time. Our daughter is our priority no matter what.”

According to research, half of parents of children with a  spinal cord injury  feel a sense of responsibility for the injury. “We feel guilty all the time,” Mark says.  “We can have a life and at the moment our daughter has nothing except the front room of our house, which I call a prison cell.”

When Sarah was discharged from hospital, the family planned her return home with a care agency. They had to adapt the house to Sarah’s needs and arrange for a care team to sleep and live in the house full time. “Having carers now living in our current house adds more pressure to the family situation, The house is a different place now but we will survive one way or another,” Mark says.

The devastating experience of spinal cord injury often causes feelings of depression and anger amongst family members. Research found that 41% of mothers and 36% of fathers are diagnosed with Post Traumatic Stress Disorder.

“We are a quiet family so it’s very hard to open up our lives to strangers,” Mark explains. “Sometimes you just want to be left alone and not have to repeat the situation over and over again.”

Even though Mark finds it hard to talk about what he is going through, he got in touch with Back Up and was paired with a mentor who had a spinal cord injury similar to his daughter. Their Back Up mentor provided guidance on accessing information and listened to his issues.

Mark thinks Back Up’s family mentoring service has helped him to feel more positive about the future. “Meeting people or families in similar situations helps a lot because you are all going through exactly the same issues,” Mark says. “Having a mentor who is almost in the same situation as our daughter and talking to that person and her family was very important to us.”

In the future, they hope that Sarah will also want to talk to other people who have sustained a spinal cord injury. “But that will only happen when she is ready,” Mark says.

Mark advises all parents going through a similar situation to take one day at a time. Even though there will be times when you feel alone and sorry for yourself, Mark thinks it’s important to be strong.  “Never give up on your loved ones because they need you now more than ever,” Mark says.

Are you a parent of someone with a spinal cord injury? Our mentors can support you! Find out more information here

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2 thoughts on “Having a daughter with a spinal cord injury

  1. It is four years now since my son’s accident and he too is paralysed from the shoulders. Thank you Mark for writing about your experience so honestly. We too, as a family, have had many tough days, and I am guessing life will never be quite the same again. Sometimes we cry but we laugh a lot too!

    After my son’s accident I spoke with a mum of a young man who had a similar injury to my son ten years earlier. She said…’The first bit is awful and then it gets exciting as you work out how to do things’. At the time I thought she was….well, quite frankly, slightly bonkers……but I often think of her now as we do just that! Don’t accept ‘can’t’, instead just work out ‘how’.

    From my perspective I believe the way forward is to embrace this new life, keep very busy and surround your ‘child’ and your family with love and positive people. I have also found that feeling sorry for myself is a waste of time and energy! I have become a woman I sometimes don’t recognise as I fight for the best for my son. People told me it would get better, I didn’t believe them…..but it does.

    Back Up have played a massive part in my son’s rehabilitation and adaptation to his new life. I don’t think I will ever be able to thank them enough. So…….if you are reading this and thinking of contacting the lovely guys at Back Up, stop thinking about it and just do it. It will be the best phone call that you have made in a long time!

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    1. Hi
      Thanks for your lovely comment – we will pass it on to Mark. Would you mind if we shared it more widely as it’s so helpful for other people to hear your experience? You may already be supporting volunteering with Back Up, but if not would you consider becoming a mentor for other family members. If you could email me on natasha@backuptrust.org.uk, that would be great.

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