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.
Jun 5, 2015

Hannah and Phoebe's story - Krabbe disease

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.

Links:

Jun 5, 2015

Hannah and Phoebe's story - Krabbe disease

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.

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:

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