Physical Health United Kingdom Project #6530

Finding treatments & cures for childhood illnesses

by Sparks Charity

Project Report | Nov 17, 2016
Sam's Story- Neuroblastoma

By Neha Patel | Sparks Representative

Sam at the Park

Thank you for supporting Sparks’ pioneering children’s medical research by making a donation. Through your incredible generosity, Sparks is funding ground-breaking research into better treatments and cures for childhood illnesses and improving the quality of life for children with medical conditions.

One such condition is neuroblastoma, one of the most common types of cancer seen in childhood - around 100 new cases diagnosed each year. Its severity can vary greatly, and approximately 20% of neuroblastoma tumours have a gene change that makes them far more aggressive. Children have to undergo a gruelling regime of chemotherapy, surgery and radiotherapy. More effective treatments for children with neuroblastoma are desperately needed.

Sam's story

Sam’s mum, Beverly, shares with us Sam’s inspiring story on his fight with neuroblastoma.

Sam was diagnosed with neuroblastoma when he was three years old, and was treated for over a year. He had stage 4 neuroblastoma, which affects the bone marrow.

‘Sam needed high dose chemotherapy which meant six weeks in an isolation ward as he was prone to infections, which could have serious repercussions for him. Sam did get an infection and was transferred to intensive care, put on a ventilator and fed through a tube. This was the most worrying time for us during his treatment but he is a real little fighter'.

We were very lucky – the chemo worked well and Sam did not need surgery to remove his primary tumour. But he did need some difficult radiotherapy, and made us so proud when having the treatment. Somehow he kept his spirits up and was an inspiration to all of the other patients around him.

Eventually, on 18 March 2009, we were told that Sam didn’t need any more treatment, just regular check-ups.

We stopped on the way home and bought as many bottles of champagne as we could carry for the family and friends who had supported us for the last year. We just wanted to shout it to everyone.

At the moment we consider ourselves very lucky that Sam has done so well. He is now four years off treatment and doing well.’

Sam is now full of energy – he even joined his local football team last year.

While Sam had an amazing recovery from his bout with neuroblastoma, many children do not. Neuroblastoma can be hard to detect, diagnose, treat and overcome.

How We’re Helping

With Sparks’ funding, a team at Brunel University are using stem cell research to see if a stem cell made with a cancer-killing gene can be used to find and eliminate neuroblastoma cells in patients. These cells are already being used in a large clinical trial on adult lung cancer.

By using stem cells, the treatment allows all neuroblastoma cells to be targeted regardless of genetic makeup. If Professor Sala and his team validate the study’s effectiveness, they can quickly establish a clinical trial and ultimately help to better treatment for this condition.

Thank you so much once again for your support. Your generosity helps to fund innovative research into underfunded areas of paediatric health, helping to change and save the lives of children like Sam.

Thank you.

Links:

Click here to find out more about our work

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Sep 16, 2016
Our Christmas miracles - meet Kiki and Nico

By Ellie Windle | Corporate Partnerships Manager

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

Links:

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Jun 15, 2016
Thank you for helping children like Calum

By Amba Petrie | Sparks Charity

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:

Find out more on our website

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