Finding treatments & cures for childhood illnesses

by Sparks Charity
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.  

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Sebastian at home with Mum and Dad
Sebastian at home with Mum and Dad

Thank you for supporting Sparks and helping us to fund pioneering children’s medical research. Your generosity helps fund research into conditions that affect the health of babies, children and expectant women – like Nicola, who is one of the thousands of women affected by premature labour.

Premature birth – Nicola’s Story

Premature birth – before 32 weeks - is a major cause of death in new born babies and can lead to life long disability. The World Health Organisation has identified premature birth as the leading cause of death for children under the age of five.

Luckily Nicola was able to take home her son Sebastian, born at barely over 24 weeks, but it wasn’t an easy journey.

“I was in established pre-term labour. I just kept thinking that it couldn’t be true; it was ridiculous because I hadn’t even reached the 5 month mark. We didn’t know if, by the end of the day, we were going to be a family, if our child was going to survive.

Sebastian was in intensive care for 8 weeks. During that time, amongst other problems, he had 11 blood transfusions, a grade 3 bleed on the brain, he got E-coli, his lungs collapsed and he had a skin infection. He spent another 5 weeks in hospital.

“Sebastian is home now and is a cheeky, boisterous 19 month old,” Nicola says. “He’s on oxygen the whole time and has to go back to hospital for tests but we are moving forward. We have some dear friends who had a little girl who was born a week after Sebastian and she never came home, she passed away at 5 months. We feel incredibly lucky but at the same time you feel guilty that yours is a success story.”

How Sparks is helping

Finding a way to accurately predict premature birth could help prevent some of the 50,000 babies currently born prematurely each year in the UK.

With Sparks funding, Professor Phil Bennett at Imperial College London aims to pioneer a technique to predict the likelihood of premature labour through simple blood and urine tests. His team are researching the metabolic changes in blood and urine that can be detected as early as 13 weeks in pregnancy. This could help to accurately identify women who are more likely to give birth prematurely and provide targeted treatment for those at risk.

Thank you so much for helping to make possible research into premature birth which will change the lives of countless families like Nicola’s.

 

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Hannah cherishes memories of Phoebe
Hannah cherishes memories of Phoebe

Thank you very much for your support of Sparks. Your kind donation helps to fund pioneering children’s medical research - from the most common illnesses to the rarest diseases.

In the UK, 75% of rare diseases affect children and 30% of people with a rare disease will die before their fifth birthday.

Sadly this was the case for Hannah who devastatingly lost her daughter Phoebe to Krabbe disease, a disabling condition of the nervous system which has no cure.

Diagnosis

“It was a normal birth and pregnancy, the same as her sister. However as time went on, Phoebe wasn’t rolling or crawling or making any attempts to pull herself up. Eventually she was referred to a lovely lady, Jill Gordon, at a child development centre. Jill said that she needed to carry out further tests on Phoebe which included an MRI scan of her brain” says Hannah.

She continues, “Jill came to the house and said it was Krabbe disease. We were told that there was nothing we could do and that we should start cherishing memories.”

Living with the condition

As time went on, Phoebe started having seizures and had issues breathing. She started to lose her sight and she only knew I was in the room because she could hear me.

“She gave me so many happy memories and the little things she did do meant such a lot. One time she did say in her own little way that she loved me”

“When you are told that your child is going to die but you don’t know when it is hard to put them to bed because you think, “Is this the last time I will see her?”

I think it’s brilliant what Sparks are doing. I would love it if in time, this disease never existed and is like a common cold which can be treated.”

How Sparks is helping

Krabbe disease is rare, affecting 1 in 100,000 births in the UK each year. The disease causes inflammation to nerve fibres in the brain and spinal cord, gradually destroying the white matter in the brain and preventing signals being sent to the nervous system. It currently has no cure.

Sparks funded scientists at the University of Cambridge, led by Professor Timothy Cox, want to discover more about how the disease develops – and how they can stop its devastating progress. Treatment may be able to change the way the disease affects patients and should be relatively simple to administer. If successful, the project would offer a huge incentive for developing treatments for many devastating conditions affecting the nervous system.

Thank you so much for supporting research which could help to change and save the lives of children diagnosed with rare diseases like Phoebe.

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Scarlett enjoying the Petra running-bike
Scarlett enjoying the Petra running-bike

Thank you so much for your wonderful support of Sparks. Your kind donation has helped to fund innovative children’s medical research that can change the lives of many children, like nine year old Scarlett.

Scarlett's story

Scarlett and her twin sister Emily were born at 32 weeks after their mother Belinda developed twin-twin transfusion syndrome during her pregnancy. They weighed just over 3lb and spent 8 weeks in special care. 

Scarlett’s development did not progress at the same rate as Emily’s and whilst Emily became more independent, Scarlett’s development remains at around toddler level. When Scarlett was one, Belinda had the official diagnosis of spastic bilateral cerebral palsy. She relies on a wheelchair or powered chair as, like many children with cerebral palsy, Scarlett has muscle weakness in her legs meaning that she is unable to walk or run independently.

Now aged nine, Scarlett recently took part in Sparks’ project that tested out specialist ‘Petra running-bikes’. These running-bikes have a unique design that allow children to stand and  run around freely with the bike supporting their posture - helping to improve muscle and bone strength whilst also giving children who usually rely on a wheelchair the chance to enjoy running.

Belinda describes the joy the running-bikes have given Scarlett:

“The running-bikes are the only thing I’ve known Scarlett to enjoy because she has the freedom she can never normally have stuck in a chair. Scarlett has difficulty using a walker as she leans backwards and her foot gets stuck underneath it, but with the running-bikes she can lean forward and move her legs.”

“We’d love to see Scarlett have more opportunities to use the running-bikes. We always get involved with any medical research projects.  If you don’t, things will never get any better”

The running-bike is faster than a wheelchair and I can use my legs” explains Scarlett.  “I run so fast.  One time I ran down the corridor and my teacher couldn’t catch up!”

Thank you!

A huge THANK YOU once again for helping to make possible vital research that will make a lasting difference to the health of babies, children and pregnant women.

Visit our website for more information about the incredible difference your support makes and the children and families who have benefitted. You can also find out about other ways you can get further involved to help fund even more pioneering research that will change the lives of children.

Scarlett with her Mum Belinda
Scarlett with her Mum Belinda

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Noah was born on 30th January 2009 after a fairly unremarkable pregnancy and a fairly normal delivery (even with the cord round his neck!)

He failed his newborn hearing screening test but his parents, Matt and Sarah, and the examiner put it down to congestion and arranged a retest. Following two retests and still no response in his left ear, they were referred to the audiology department.

In the meantime, when he was about 3 weeks old, Sarah received a call from Kingston hospital who are participating in the Sparks-funded research. ‘They informed me that they had discovered I had an infection in pregnancy and they needed to see if I had passed it to Noah,’ explains Sarah. ‘With much hilarity we finally captured a urine sample and rushed it to the hospital as they said we only had a small window in which to test for the virus.’

But the laughter was initially short lived. ‘A few days later, I received a call to say that Noah had indeed contracted the virus but that he showed no signs of being affected and would probably be fine. I happened to mention the failed hearing tests and they put two and two together and called us in’ Sarah recalls. ‘It was Friday and we had to wait till the following week for our appointment – in the meantime we went online and read about what our future might hold. We spent a very tearful weekend reading about what Noah’s life might be like as a child with cCMV (congential cytomegalovirus) and we were devastated.’ cCMV can cause mild to severe hearing loss and can be treated in the first months of life.

That all seems like a lifetime ago – following a meeting with Dr. Sue Luck, Noah was admitted to Kingston Hospital and from the age of 4 weeks until 10 weeks old he received twice daily intravenous Ganciclovir, an antiviral drug.

He has regular check-ups and all seems to be going well – his eyes are clear of CMV and, apart from an occasional bout of glue ear which causes new challenges, his hearing seems unchanged. Mostly it’s not getting in the way and he is developing very well. His speech is good and he is picking up reading faster than average and developmentally, specialists feel he is ahead of the game so Matt and Sarah are keeping their fingers crossed that the treatment worked.

‘Noah is a happy, loving and enthusiastic little boy who is eager to learn so it seems we got off lightly in terms of CMV’ says Sarah. ‘Many other families I’ve chatted to have experienced more severe symptoms, including greater levels of hearing loss or hearing loss getting worse over time. I also know that a lot of families don’t get the opportunity to consider antiviral treatment for their baby because they just don’t get a diagnosis in time.  We feel very grateful that Noah had the opportunity for treatment that could have preserved his hearing. We hope doctors will use the findings of the research funded by Sparks to give more children born with CMV this opportunity in future.’

Thank you so much for your support of Sparks, helping to fund more research projects that could help children like Noah. We really appreciate your support.

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Organization Information

Sparks Charity

Location: London - United Kingdom
Website: http:/​/​www.sparks.org.uk
Project Leader:
Eleanor Windle
Miss
London, London United Kingdom
$29,491 raised of $35,000 goal
 
510 donations
$5,509 to go
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