Improving the Quality of Life for Children

 
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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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Caroline’s third daughter, Zoe, was diagnosed with cerebral palsy the day before her second birthday.

Zoe was born three months premature, weighing just 2lb 2oz. Caroline tells us about their inspiring journey and how Sparks helps them keep the faith.

“When Zoe was born, she was the length of my husband’s watch. A face cloth completely covered her, and her whole hand was my thumb nail. As much as she was vulnerable, I also thought ‘wow, this is a real miracle’.”

Up until the age of two, she met all her milestones so we weren’t too worried, but I could tell there were balance issues and things like that. People would tell me ‘no, no, it’s just because she’s little, you’re nervous’.

The day before Zoe’s second birthday, we went for an appointment and were told she had cerebral palsy – completely out of the blue. We had everyone waiting at home for a birthday party. I’m ashamed to say that I had no previous knowledge of any disability.

I visualised the worst: wheelchair, dribbling, not being able to stand, walk or talk. As we walked to the car, I remember my husband saying, ‘I’m telling you now she is going to walk’. I was so sad looking down at her little red patent shoes thinking, ‘she is never going
to walk in those’.

I felt like windows of opportunity were closing for my daughter, but I didn’t want to be negative with it, and that’s been our attitude ever since. And that’s what Zoe does. I couldn’t ask for a better daughter, or for a better person to be in my life. She amazes me really.

She’s had a massive amount of knock-backs, but she pushes the boundaries and does as much as she can. We were launched into a world we didn’t expect to be in, but are now proud to be part of. We’ve met lots of families who want the best for their kids.

“The world is difficult for kids like this. That’s why it’s nice to have Sparks there.”

Having a disabled child is a rollercoaster that bonds families. Every milestone Zoe met was a celebration within the family. And we have an amazing extended family that inspired us to keep going. My father has tried to climb the peaks for charity, aged 72. Zoe’s sisters are great, they look out for each other. They are all very unique and we celebrate them all.

Sparks came into our lives when Zoe was going from appointment to appointment. We spoke to Sparks research specialists and met people who have done amazing things.

When we did the Sparks fashion show in 2006, she had a beautiful dress but big Perspex splints with Velcro all round them. So you had this beautiful angelic child, this gorgeous sparkly dress and then these big splints. Zoe has a good attitude and is up for trying anything. We do laugh at some things, like funny boots and funny shoes and things. It’s not easy but we get through together.”

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When Charlotte was told she was expecting twins her life changed dramatically. Having her twins, Lily and Grace, at 30 weeks meant they were in hospital for seven weeks. Here Charlotte shares with us her experience of a twin pregnancy and how the girls are doing now. 

“Hearing for the first time that I was to have twins was a really big shock. My mum and aunt came with me for my scan and they saw it even before I did. I just saw their shocked faces and was so worried that something was wrong with my baby. When I turned to look at the scan though, I saw that there were two perfectly clear babies on the screen and we all just started crying. My husband is in the Army and wasn’t around for the scan so afterwards I sent him the image of our babies – he actually thought that I had sent it to him twice by mistake, he couldn’t believe that we were having twins!

Being pregnant with twins you get a lot of medical attention; I had more scans, I had my blood pressure taken more regularly and I had a midwife who specialised in twin pregnancies, she really looked after me. Carrying twins is quite a surreal experience as the terminology surrounding pregnancy always focuses on one baby and even I found myself saying ‘baby’ rather than ‘babies’. Attending the twin clinic was wonderful and it really helped me understand my pregnancy. Twin pregnancies are high risk and that meant that I was quite worried during my own. Having the twin clinic really reassured me; in fact I would have happily gone in everyday to check the girls were okay.”

Premature twins

“I went into labour early and was taken to hospital where they put me on a drip which slowed down the process. This meant the doctors were able to give the girls steroids to help develop their lungs. I was taken off the drip after three days and my labour started again. The girls were born prematurely, at 30 weeks, by caesarean section both weighing 3lbs 9oz. They just seemed so tiny. Being premature, they weren’t able to breathe on their own so they were taken straight to the neonatal intensive care unit (NICU). I found this incredibly hard as I barely spent any time with them before they were taken to the NICU.

Lily and Grace were in hospital for seven weeks. As well as regular brain and heart scans, they both had blood transfusions and lumbar punctures. Grace was also suffering from necrotizing enterocolitis, a gastrointestinal disease which causes infection and inflammation that can lead to varying degrees of destruction of the bowel. She had a long line fitted to provide her with nutrients as she was ‘nil by mouth’. Thankfully, she fully recovered once she finished her course of antibiotics.

I was with the girls for each of these procedures. It was a very traumatic time for us all. I think of all the time in hospital Christmas was the worst day for us, we really wanted the girls to be at home but this was impossible and instead they woke up on their own in a hospital incubator. I’m looking forward to giving them their first proper Christmas at home this year.

Bringing the girls home

“Bringing them home was pretty scary if I’m honest. Suddenly I really felt like a mum. Life with twins is very different from what is used to be – you never have time to stop. Getting the girls out of the house can be tricky, the amount of stuff that I need to take means I have barely any room to carry anything for myself. Even a quick trip to the shops can take ages as we constantly get stopped by people who want to see the girls.

The girls are now completely signed off from the hospital and apart from being a little behind in terms of development they are very healthy babies. To look at them you wouldn’t think they were born prematurely, they are the same size as babies of their age.

Having twins means you get everything twice – you have two babies to love and you get twice the amount of cuddles. Grace is definitely the cheeky one, whilst Lily is very laid back. They do always want to be together, most of the time if they cry it’s because they have woken up without the other one there with them.

It’s so great to hear that Sparks’ researchers are trying to prevent the high rates of twins being born prematurely. If the girls had been born at full term, it would have prevented them going through everything they did. Having twins is an amazing thing and I can’t wait to see what Lily and Grace’s future holds.”

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Organization

Project Leader

Eleanor Windle

Miss
London, United Kingdom

Where is this project located?

Map of Improving the Quality of Life for Children