Sparks Charity

Sparks is a leading medical research charity dedicated to funding pioneering research into wide ranging conditions and disabilities affecting babies, children and mums-to-be. Our mission is to have a practical and positive effect on the everyday lives of chldren by investing in high quality medical research.
May 13, 2013

Using mirrors to treat cerebral palsy

Holly and her mum
Holly and her mum

Using mirrors to treat cerebral palsy

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.” 

Getting a diagnosis

“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.”

 Living with cerebral palsy 

“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.”

 The mirror box 

“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.”

Holly and her mum
Holly and her mum

Links:

May 13, 2013

Using mirrors to treat cerebral palsy

Holly and her mum
Holly and her mum

Using mirrors to treat cerebral palsy

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.”

 Getting a diagnosis

“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.”

Living with cerebral palsy

“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.”

 The mirror box

"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.”

Links:

Jan 8, 2013

Adapting our lives for Batten Disease

Laura and her mum Ellen
Laura and her mum Ellen

Laura has Batten disease, a very rare neurodegenerative disease. Children are born apparently healthy, develop epilepsy, and lose their sight, speech, mental and motor abilities before dying between the ages of 5-30. The
condition affects approximately 200 – 250 children in the UK with at least 10 new children being diagnosed each year. Laura’s mum Ellen explains how juvenile Batten disease has changed their lives.

 

“Laura is a bright, beautiful, kind girl who is fiercely independent. She’s everything I could ever have hoped for in a daughter.

 

When Laura was six years old we noticed that she was holding books closer to her eyes and was edging nearer to the television. We took Laura for a check up at the opticians, which lead to a visit to our local hospital and an initial diagnosis of bilateral macular dystrophy. We were told this would mean a slight decline in her vision which would then stabilise for many years with partial vision. We were told it might be another 10 to 20 years before Laura would suffer any further decline.

 

We re-organised our home and Laura’s schooling to adapt to Laura’s partial sight. But 18 months later she had no useful vision left at all. We changed everything again and started home-schooling Laura. She began achieving more than we could have ever expected and we believed Laura would live a very fulfilling life as a blind person.

 

One day Laura had an epileptic fit but we were told that it was not related to her vision, that it was very common for children to have one-off seizures.

 

In the November of that year I made an appointment for Laura to see a leading consultant at Moorfields Eye Hospital. I nearly didn’t mention the epileptic seizure that Laura had suffered 18 months earlier as I had almost entirely dismissed this from my mind.

 

At the mention of the epileptic seizure the consultant’s demeanour changed and in that instant I knew that we were facing the worst sort of news. He made an immediate appointment with the Paediatric Neurologist upstairs and I was offered a quiet room and a cup of tea. I could not stop the tears flowing, though I tried to shield my dismay from Laura. Laura needed a blood sample and we had a wait of six weeks before we got the result. My husband David and I travelled back alone to the hospital in January 2009 and were given the diagnosis of juvenile Batten disease. Laura was nine years old.”

 

Family life

“Life before Batten disease seems like a different world to me now. Every aspect of our family life has changed. Almost every day involves heartache of some sort. The unrelenting pain of this situation has definitely taken its toll on us. On the more positive side, we have all become much better at handling this constant pressure. One of my favourite quotes is, ‘Life shouldn’t be spent waiting for the storm to pass, but learning to dance in the rain’. We are now very good at recognising and seizing every opportunity to dance!

 

When we explained Batten disease to Laura we described it as her ‘naughty gene’ and she knows that it is this naughty gene that has taken away her eyesight, which causes her to have epileptic seizures and makes her clumsy and forgetful.

 

Laura is still exactly the same person. Her circumstances continue to become increasingly difficult as this cruel disease closes more and more doors for her. The exclusion she encounters every day is heart breaking. She does cry quite often, especially when facing rejection. Having said that, I could not be more proud of Laura for the way she copes. She never complains and always makes the very most of any opportunity she is given.”

 

Living with Batten disease today

“Laura now spends her week away at school in Worcester but when she is home she enjoys listening to audio books, re-enacting these books and playing cards or walking the dog. When Laura is at home I spend all my time caring for her. It’s relentless and exhausting and trying to find meaningful activities to fill Laura’s day is one of my biggest challenges.

 

My hope is that in my lifetime, we will find a cure for Batten disease in order to save other children from suffering like my own daughter has. I am really grateful to Sparks for funding a research project that looks at therapies to treat juvenile Batten disease. This project offers real hope of moving us significantly closer to finding an effective treatment. Sparks’ research into Batten disease is inspiring and we really believe it can make a difference and provide the hope that is needed for children like Laura.”

Links:

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