Improving the Quality of Life for Children

by Sparks Charity
Vetted
Newborns
Newborns

Thank you for your support of Sparks, helping to fund pioneering children’s medical research that aims to  find better diagnoses, treatments and cures for a range of conditions affecting babies, children and mums-to-be.

To ensure that Sparks makes the biggest impact over the next five years, one of our research priorities is to fund research aimed at better understanding, predicting and preventing premature birth.

Kiki and Nico

The birth of a child should be a magical time for Mum and Dad. However, this isn’t always the case. Andrea and Paul went through a tough and scary time for the birth of their twin girls Kiki and Nico. At 20 weeks into her pregnancy, Andrea’s placenta ruptured and she was told her twin girls were unlikely to survive.

“When you are first told you are having twins it is a shock – but then when you think you might lose them your world comes crashing down” Andrea, Kiki and Nico’s Mum

Andrea tells us “It was a very tough pregnancy. I had the stress of potentially losing the girls and I was away from my children and family, having to spend two months in hospital constantly bleeding and having regular blood transfusions. I was told I could go home for Christmas but I didn’t make it, as I went into labour on Christmas Eve”.

Thankfully both babies were delivered safely 10 weeks prematurely. Kiki had clubfoot and chronic lung disease and had to spend 84 days in the Special Care Baby Unit. Now aged five, both are happy healthy children who have started school.

“Without medical research and knowledge gained in the past, our twins’ treatment could have been completely different. Now our babies can look forward to a near normal life at home with us.” Andrea and Paul, Kiki and Nico’s parents.

Thank you With supporters like you, we are able to fund innovative research to help children like Kiki and Nico have the best possible start in life.   

First day at school
First day at school

Links:

Calum
Calum

Thank you 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.

Conditions like heart problems, which affect one in every 100 babies making it one of the most common birth defects in the UK. These babies often have problems specifically in the right chamber of their heart, just like Calum. Now 10, Calum has spoken about this in his own words and the ongoing impact it has on his life.

“When I was 6 hours old, the doctors came to check on me and listen to my heart. They heard that it didn’t sound right. By lunchtime the next day, the murmur still hadn’t gone so they decided I would have to have an ultrasound and found some major parts of my heart were missing. It was very scary for my mum and dad because they knew that I had quite a serious problem.”

When Calum’s heart was forming, the two main arteries didn’t separate and twist as they normally would, but rather stayed together as a trunk. This meant that Calum had to undergo surgery at just 10 days old.

“The doctors separated the two chambers at the bottom of my heart and then put in a man-made tube to make part of my pulmonary artery, which carries blood from the right chamber of the heart to the lungs. This makes it separate like it should have done.

My next operation was when I was 4. The tube inside me doesn’t grow like I do so they have to change it. I also get scar tissue where they put the tube, and if this builds up, the passages become narrow so my heart has to work harder. This means I had to have another operation and another one when I was 6.” Calum is also due further operations throughout his life.

How we’re helping

Despite being one of the most common birth defects, there has been little research into this area and there are currently no medicines for children with this condition.

Babies may grow up with high-pressure in the right chamber of their heart, affecting their ability to take part in daily activities, sports and games. Sadly, when some of these children reach their teens or adulthood, they can suffer heart failure and early death.

Sparks funded researcher, Professor Robert Tulloh, is looking into ways to improve the length and quality of life of children with this condition. His team will investigate the changes that are occurring in the heart muscle and determine the cause of the failure in the right heart chamber. They aim to develop better treatments for many children affected by heart problems at birth and beyond.

Without supporters like you, Sparks wouldn’t be able to fund research into serious conditions like congenital heart defects that affect babies in the very early stages of their lives.

Thank you.

Links:

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:

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:

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.

 

Links:

 

About Project Reports

Project Reports on GlobalGiving are posted directly to globalgiving.org by Project Leaders as they are completed, generally every 3-4 months. To protect the integrity of these documents, GlobalGiving does not alter them; therefore you may find some language or formatting issues.

If you donate to this project or have donated to this project, you will get an e-mail when this project posts a report. You can also subscribe for reports via e-mail without donating.

Get Reports via Email

We'll only email you new reports and updates about this project.

Organization Information

Sparks Charity

Location: London - United Kingdom
Website: http:/​/​www.sparks.org.uk
Project Leader:
Ellie Windle
Miss
London, United Kingdom
$33,007 raised of $40,000 goal
 
 
305 donations
$6,993 to go
Donate Now
Donating through GlobalGiving is safe, secure, and easy with many payment options to choose from. Learn more.
Add Project to Favorites

Help raise money for this important cause by creating a personalized fundraising page for this project.

Start a Fundraiser

Learn more about GlobalGiving

Teenage Science Students
Vetting +
Due Diligence

Snorkeler
Our
Impact

Woman Holding a Gift Card
Give
Gift Cards

Young Girl with a Bicycle
GlobalGiving
Guarantee

Sign up for the GlobalGiving Newsletter
WARNING: Javascript is currently disabled or is not available in your browser. GlobalGiving makes extensive use of Javascript and will not function properly with Javascript disabled. Please enable Javascript and refresh this page.