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.
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:

Jun 6, 2014

Premature Twins - Lily and Grace's Story

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.”

Links:

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