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 13, 2015

Scarlett's story - improving the lives of children with cerebral palsy

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

Links:

Mar 13, 2015

Scarlett's story - improving the lives of children with cerebral palsy

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

Links:

Dec 2, 2014

Noah's Story

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.

Links:

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