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 17, 2016

Eilish's story - research into rare diseases

Baby Eilish
Baby Eilish

Eilish’s mum, Kirsten, tells us about the difficulty in getting a diagnosis for Krabbe disease and the tragic loss of her daughter.

“Eilish was always a sicky baby and at 5 weeks old she was diagnosed with reflux.  We weren’t worried as one of her brothers had had it too, however the medicines that worked for him seemed to have little effect on Eilish.

She continued to develop but she struggled to put on weight because she was vomiting on average 4 to 5 times a day. 

Getting a diagnosis

After about four months our GP referred us to a paediatrician. I couldn’t get her to feed and when I did, she vomited. She was treated for severe reflux and also given an MRI scan. We saw a neurologist and a metabolic specialist. That evening we were told Eilish had an incurable enzyme deficiency. They weren’t sure which one but they would do further tests. A month after our first referral we were told she had Krabbe Disease.

Although there was a sense of relief that we knew what was wrong with Eilish, and we could now help stop the pain she was in, we were totally devastated and heartbroken. Nothing can prepare you for being told that your child has an incurable, rare disease.

“She had a range of medications which helped the pain. Whilst finding out more won’t bring Eilish back, if the research that Sparks is funding helps even one family then it is worth it.”

How we’re helping
Krabbe disease is a disabling condition that currently has no cure – most babies with the disease will die by two years of age. With Sparks' funding, Professor Timothy Cox and his team want to discover more about how the disease progresses – and how to stop its progress. They are testing whether they are able to block the disease process that kills brain cells and help affected children as a result

Without supporters like you, Sparks wouldn’t be able to fund research into Krabbe disease.

Thank you.

Links:

Mar 17, 2016

Eilish's story - research into rare diseases

Baby Eilish
Baby Eilish

Eilish’s mum, Kirsten, tells us about the difficulty in getting a diagnosis for Krabbe disease and the tragic loss of her daughter.

“Eilish was always a sicky baby and at 5 weeks old she was diagnosed with reflux.  We weren’t worried as one of her brothers had had it too, however the medicines that worked for him seemed to have little effect on Eilish.

She continued to develop but she struggled to put on weight because she was vomiting on average 4 to 5 times a day. 

Getting a diagnosis

After about four months our GP referred us to a paediatrician. I couldn’t get her to feed and when I did, she vomited. She was treated for severe reflux and also given an MRI scan. We saw a neurologist and a metabolic specialist. That evening we were told Eilish had an incurable enzyme deficiency. They weren’t sure which one but they would do further tests. A month after our first referral we were told she had Krabbe Disease.

Although there was a sense of relief that we knew what was wrong with Eilish, and we could now help stop the pain she was in, we were totally devastated and heartbroken. Nothing can prepare you for being told that your child has an incurable, rare disease.

“She had a range of medications which helped the pain. Whilst finding out more won’t bring Eilish back, if the research that Sparks is funding helps even one family then it is worth it.”

How we’re helping
Krabbe disease is a disabling condition that currently has no cure – most babies with the disease will die by two years of age. With Sparks' funding, Professor Timothy Cox and his team want to discover more about how the disease progresses – and how to stop its progress. They are testing whether they are able to block the disease process that kills brain cells and help affected children as a result

Without supporters like you, Sparks wouldn’t be able to fund research into Krabbe disease.

Thank you.

Dec 9, 2015

Nicola's Story - Premature Birth

Joe playing football
Joe playing football

Thank you so much for your support of Sparks’ pioneering children’s medical research. Your amazing generosity helps fund research to find better treatments and cures for childhood illnesses and to improve the quality of life of children with a range of medical conditions – from the most common illnesses to rare diseases.

Living with Childhood Arthritis – Joe’s Story

Joe was diagnosed with Juvenile Idiopathic Arthritis (childhood arthritis) when he was six years old which left him unable to walk at times. Thanks to research and the development of a new medicine, he’s now a fit 14 year old who stars for his local football team. 

“When I was six I had really painful joints which left me unable to walk. I remember being diagnosed with juvenile arthritis, it was really horrible. My Mum and Dad were shocked as arthritis is something that you think only old people get.

“I was in hospital for a few weeks, isolated away from my friends. I was put on a number of different drugs and steroids. One of them used to make me sick every time I took it.

At hospital I was told about a new medicine. It was a bit scary at first as it was brand new, but the alternative was daily injections so I was eager to try it!

“The difference the new medicine has made to my life is amazing. Friends that I’ve made over the last few years don’t even know I’ve got arthritis. I run around every weekend playing for my local football team and sometimes get to Arsenal games with my Dad.

“One of the best things about the new drug is it means I miss less school and seeing my friends. I want to work for the Police when I’m older. Research and this new drug has opened up these options for me. The work that Sparks funds is so important. It’s helping children like me all over the country and I’m so grateful.”

How Sparks is helping

Arthritis is a condition where the joints become inflamed, painful and stiff. There are estimated to be around 12,000 children living with it in the UK and if not well controlled, can lead to severe pain and disability.

Sparks’ research led by Professor Lucy Wedderburn’s team at the UCL Institute of Child Health are aiming to develop a simple test that will predict whether a child will respond well to medication for arthritis or not as well as when they can stop taking it. This will ensure they get access to the most effective treatment as quickly as possible.

Thank you so much for helping to change the lives of children like Joe.

Find out more about Sparks research projects into childhood conditions

Links:

 
   

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