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.
Mar 10, 2014

Learning to live with burns

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.” 

Links:

Dec 16, 2013

Helping children with sickle cell disease

Four-year-old Jacob was diagnosed with sickle cell disease at birth. His mum Sheree explains the impact that 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 too severe then I will take him to hospital. The pain can be excruciating.

Despite everything, he is so good at taking his medicine, and half the time is the one to remind 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 sufferers run a higher risk of having 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 much never be put at risk of prompting 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 playing 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 to 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 never would have thought about doing any of those 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 his 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 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'm so grateful to Sparks for funding this vital research.

Dec 16, 2013

Helping children with sickle cell disease

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."

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