When Holly was 20 months she was diagnosed with cerebral palsy a condition which affects the movement and co-ordination of her right hand side. Holly is involved with a Sparks research project which uses mirror therapy to help improve the function of her affected arm. Here her mum Denise tells us more about Holly’s story and why they decided to get involved with the project.
‘Holly is a very happy, very cheeky and determined little girl who is loved by all who know her. She’s quite the performer and is forever putting on dance shows for us with her sisters Alice and Amy. They’ll disappear into the dining room for hours and emerge with their latest show that they’ll perform for me and my husband Paul.
Holly was born at 2.40am on 24th May and initially everything seemed fine. When Holly was about 17 hours old, she stopped breathing for a short period of time and turned grey. My sister was visiting me at the hospital and as she picked Holly up she turned to me and said that she wasn’t breathing. This was horrendous and of course we immediately rang for the nurses. Holly started breathing again naturally but was transferred to the Special Care Baby Unit, where she had a brain scan, a lumbar puncture and numerous other blood tests. Nothing untoward showed up and we were able to take Holly home when she was six days old.
Holly was around four months when we noticed something wasn’t quite right. She never relaxed when I was feeding her and her little body seemed so tense. When she was about six months old, we started encouraging her to try and sit up but she would seem to throw herself backwards, and always held her right arm behind her, with her fist tightly clenched. As Holly was our second child we knew that something wasn’t quite right and at first we worried that she may have dislocated her shoulder.”
“I remember mentioning our worries to our health visitor who told us that all children were different, and not to compare Holly to our first. When she was eight months we raised our concerns again and were referred to the physiotherapist. We went to see her when Holly was about 10 months old, at which point she was still not sitting up properly and couldn’t roll over. Within minutes of meeting Holly the physio said she believed Holly had suffered a brain injury. Holly was referred to our local children’s physiotherapy unit immediately.
At first, when we were told Holly has a brain injury, I don’t think we fully understood its significance. We asked how long it would take to get better but the physio told us that it wouldn’t. How Holly was then, was how she was always going to be. I think we only understood this fully when we got the final diagnosis of cerebral palsy when Holly was 20 months old.
Following her diagnosis, we spent two days questioning what it meant for Holly and us as a family. Naturally we were extremely upset. But then we realised that Holly was still Holly, our cheeky and determined little girl. So we just carried on as normal and we’ve never really looked back.”
“Holly knows she has cerebral palsy, although initially she called it ‘terrible palsy’ which is what her little sister Alice now says too. Holly knows that it’s why she falls over, why she doesn’t always make it to the toilet in time and why her right hand doesn’t work in the same way as her left.
Holly’s sisters, Amy, 10, and Alice, 5, understand the condition. Alice knows that Holly can’t run as fast and falls over, and even wonders why she can’t have a splint like Holly.
Amy is very much a big sister to both Holly and Alice but more so with Holly. She gets upset when Holly falls and hurts herself and takes extra special care of Holly at school. Whatever therapy Holly has had, her sisters have always been involved, whether it’s playing games, helping with speech exercises or going to watch Holly when she does hydrotherapy. They always celebrate Holly’s achievements because they recognise that anything Holly achieves always takes that extra bit of effort.
I would say that Holly’s diagnosis has changed the way we approach things in life. We have had to devote more time to Holly’s needs and I gave up work when Holly was diagnosed. But I wouldn’t call it negative. Our children are our life. As a family we go swimming together a lot, Holly in particular loves it and has been an avid member of the local swimming club for the past year. The girls look forward to going to the Donkey Sanctuary for the sibling sessions where they can ride donkeys together and enjoy each other’s company.”
“We got involved with the mirror box research for two reasons. Firstly we wanted to do something for Holly but we also wanted to change things for others. Without research like this, progress into medical conditions wouldn’t be made and such positive achievements wouldn’t come about. If we can help Holly make a small achievement in her ability to use her affected arm, it is a massive achievement for us. If that can give hope to others in anyway then it’s been worth it for us.
Holly loves being involved with the mirror box and had a wonderful time when she visited the project. She likes things that are personal to her and holds them very close to her. Before we went I told her why we were going and how it will help her affected arm move better, so she knew what to expect. She is very pleased with her mirror box and I can already see it’s starting to make a difference.
I think Sparks is a fantastic charity that is there to support so many areas of research. It is because of such research that children like Holly are given hope for what they can achieve.”
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