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.
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:

Sep 5, 2014

Coping with Cerebral Palsy

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.”

Links:

Sep 5, 2014

Coping with Cerebral Palsy

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.”

Links:

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