Finding treatments & cures for childhood illnesses

 
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Jade's Story

When Jade was four years old she was burnt by a cup of coffee. This led to her undergoing numerous treatments, including wearing a pressure garment, for four years. Jade’s mum Nicky tells us about Jade’s story and explains how the Sparks research looking into the treatment of burns could help other children.

“Jade was four at the time and was at my auntie’s house when I got a call to tell me she had been burnt and that she was being taken to hospital. Jade had been in the kitchen when she had accidentally picked up a cup of coffee which had spilt down her. I rushed to the hospital where Jade was being bandaged and treated for the burns. We were told Jade wouldn’t be admitted but that we would need to come back the next day to get her bandages changed.

We went back to the hospital for the next few days and had Jade’s bandages changed. On the third day of going, the consultant was carrying out his rounds as normal but when he looked at Jade’s burns he explained to me that they were deeper than they had originally thought. Jade was referred to the Queen Victoria hospital in West Sussex, who deal specifically with the treatment of burns.

“When we arrived at the Queen Victoria, Jade was almost immediately given morphine and her burns were photographed.”

A couple of days later she underwent a skin graft and then stayed in hospital for a total of ten days, with me staying in the parent’s annexe. This was a particularly hard time for us, it was incredibly difficult to see my daughter in such pain and having to deal with the severity of the burns, which we had originally thought were mostly superficial, was very worrying.”

 

Wearing a pressure garment

“About a month after Jade’s skin graft we had an appointment with the occupational therapist who told me that Jade would have to wear a pressure garment.

“A pressure garment is a skin coloured bodysuit which compresses the burn scars to make them softer, paler and flatter.”

I have to admit when I first saw the pressure garment I was shocked that Jade would have to wear this 24 hours a day, seven days a week.

Along with the pressure garment I needed to massage Jade’s burns with a special cream three times a day. Jade and I would get up early to do this before school, then again when she got home and finally just before she went to bed.

I think wearing the pressure garment was one of the hardest parts of Jade being burnt. When we were out in public, people would often stare at it and wonder why, particularly in summer, she had to wear this. Jade was too little to notice this but it was something which particularly upset me. I don’t think Jade could have been better at coping though, she never once complained about wearing the pressure garment or being too hot in it. This was a great comfort to me and just showed what a headstrong little girl Jade was and still continues to be.

Jade wore the pressure garment for four years; her scars have now matured and healed to a natural skin colour so she no longer needs to wear the garment. The burns are still noticeable but for Jade it doesn’t really seem to bother her. When children at her school ask her about the burns she is happy to tell them how she got them. She really enjoys swimming and a lot of other sports like badminton and horse riding and she is happy to throw herself into these, it hasn’t changed her or her confidence at all. She also attends a camp with children from the burns unit at Queen Victoria and this has been a great support both to her and me, as I have met the parents of the children with burns like Jades. Just knowing that others have been through what we have has been of comfort to me.”

 

Changing the future for children like Jade

“Knowing about the Sparks research which looks to treat burns in a better more effective way is really amazing, particularly after everything Jade and I have been through. It would have made a big difference to Jade, not having to undergo the skin graft which was quite a traumatic procedure for her at such a young age. Having a simpler, more effective treatment would hopefully mean children could recover more quickly and get back to their normal lives faster.

It’s great to know Sparks are working hard to improve treatment for children, any change that could me made, even for just one child, could really make a difference.

 ”I’m so pleased to support Sparks’ mission and hope sharing our story can give hope to others.”

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Life with sickle cell disease

Four year old Jacob was diagnosed with sickle cell disease at birth. His mum Sheree tells us about the impact this has had on their lives and why she is so keen to raise awareness and support for Sparks' research.

"I was 41 when I had Jacob, and as an older mum I thought I would get tested for Downs Syndrome and other conditions, just in case. When it came back that my baby had sickle cell disease, I thought it had to be wrong."

Sickle cell crises

"Jacob had his first "crisis" when he was a baby, which is a painful attack caused by sickle cell. At first it was a shock, but now I'm much better at spotting them. I can tell if he's about to have a mini crisis as he looks jaundiced, his eyes go yellow and his hands and feet begin to swell. I know how to feel for his spleen in case it is enlarged, and if it gets to severe then I will take him to hospital. The pain can be excruciating.

Despite everything, he's so good with taking his medicine, and half the time reminds me of what he needs. He takes penicillin daily to boost his low immune system and also has regular check ups and brain scans. Sickle cell patients run a higher risk of suffering a stroke, so early risk detection is important.

One of my biggest worries as Jacob starts school is making sure that he is taken care of. He must never be put at risk of promting a crisis by getting too hot, too cold or doing strenuous activity, which means he can miss out. I want him to be able to do normal things like running, football or swimming. I am fighting to get him access to the warmer hydropool so that he can do more than just watch his sister Savannah enjoy the water. Last year we managed to get him out in the snow for the first time with special boots and a snow suit. Usually he only gets to watch his friends from the window."

Giving something back

"Jacob has given me great determination to help him and other sufferers. All the times he has been in hospital he has been so brave - he really inspires me. It's meant a lot to me to be able to give something back, and I have done all kinds of fundraising from running marathons to holding car boot sales. Before Jacob, I would never have thought about doing any of these things.

It's important to talk about your feelings to other people - even if it still makes you cry every time. Talking to other families has helped me understand more about the condition and how to cope with the illness.

My life is dedicated to my children. My daughter Savannah is a carrier of the sickle cell gene like me, but I am determined to raise awareness about the condition. I hope that I can help make a difference.

Sparks research into new therapies for sickle cell is invaluable. It is a lifelong condition, and improving methods of treatment would greatly enhance the quality of life for children like Jacob. I am so grateful to Sparks for funding this vital research."

Heidi was diagnosed with pre-eclampsia when she was 27 weeks pregnant. One week later, her daughter Chloe was delivered by emergency caesarean, weighing just 1lb 8.5oz. Heidi explains how pre-eclampsia has affected their lives, and why she’s so keen to support research into improving the diagnosis of this condition.

“I’m a midwife myself, and my friend noticed I looked under the weather when I was on the nightshift. I was 27 weeks and two days pregnant. I was very surprised to be diagnosed with pre-eclampsia as I had felt fine all the way up to my diagnosis.

Chloe was delivered at 28 weeks and one day by emergency caesarean – I was over the moon as my consultant said getting past 28 weeks is crucial. She weighed just 1lb 8.5oz and had to be put on a ventilator.

Effects of pre-eclampsia

“My daughter is now four years old, and she’s obviously the one who has been most affected by pre-eclampsia. She had such a tricky start to life but she continues to surprise us with how well she’s doing. She was at a higher risk of complications because I had developed the condition so early on in my pregnancy.

Chloe suffers from chronic lung disease, due to scarring on her lungs. She suffers more than others with wheezing and really bad coughs, but she will grow out of this eventually. We tend to be a bit more anxious with her than we would probably be with a full-term, healthy child, but I think most parents would be the same. She will always be smaller than a full-term child, as she has a lot of catching up to do, but developmentally she has caught up with other children.

I donated my placenta for Sparks research into pre-eclampsia. I really look forward to seeing the results of Sparks research project to improve diagnosis of pre-eclampsia. At the moment, I would shy away from getting pregnant with another child in the fear of suffering from the condition again. My consultant told me that, as I had early onset pre-eclampsia, there is a one-in-four chance of it happening again. If researchers could find a marker that would show if it would happen again, or could pick up on it earlier, it would be a massive breakthrough for me, and for all those other mums out there.”

Research for the future

“For those of you who have raised money or awareness for Sparks, I am eternally grateful. Anything that can help prevent other women going through what I’ve gone through, and what I see other pregnant women going through everyday, can only be a good thing. I look forward to the day that research can pinpoint those women at risk of pre-eclampsia, and maybe one day they can prevent it from happening at all.”

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.”

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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.”

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Project Leader

Eleanor Windle

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London, London United Kingdom

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