Tag Archives: fundraising

“It’s characters like Craig who are the true role models our society and generation needs”

Guest blog by Ellie Hetebrij, a photojournalism student. Ellie was inspired to capture Paralympic cycling hopeful, Craig Green, training for Rio 2016 after reading his story as part of our 100 days, 100 stories campaign.  

My background in photography is in sport and extreme training. This year I have started following Paralympic hopefuls and disabled athletes for what I hope will be an ongoing project about what it takes to win a place to compete at Rio.

Craig training on an indoor static bikeI first came across Craig Green when I read an article about him on Scope’s website as part of the 100 Days, 100 Stories campaign. While reading it, I couldn’t help but be inspired by him – he had risen above the obstacles life had thrown at him and sounded so determined.

I don’t think that I had any preconceptions about disabled athletes. I’m incredibly inspired by what Craig and the others I’m documenting do. The way in which Craig turned his life around is Craig pumping up his bike tyreswhat I found incredibly inspiring; to me it’s characters like Craig who are the true role models our society and generation needs.

In all inspiring people’s stories there is always an event where the main character lands in trouble. But this is where Craig’s story really begins, although it may sound hard to believe, it would seem that the day Craig went to jail is the day his life changed for the better.

Craig training in the velodromeCraig was born with Poland Syndrome, a condition affecting his right hand and pectoral muscles. When he left school, he was told that his hand would stop him following his friends into a trade like bricklaying or the Army. In need of money, he found work on a cannabis farm and in June 2010 was sentenced to four years in prison for conspiracy to cultivate a class B drug.

Craig putting his bike helmet onThis proved to be a turning point. He spent his free time getting fit and volunteering at the prison gym and then the Peterborough YMCA community gym, which he now manages. He got hooked on cycling after a successful trial for the British cycling team after attending an event showcasing Paralympic sports.

He now trains six days a week and is a C5 paracycling hopeful for the Rio Paralympics in 2016. The Rio qualifiers are coming up in September and he needs scores and points from this season’s competitions and the World Cup Series to win a sport on Team GB.

Craig is a truly inspiring and humble character. It has been a pleasure working alongside him in his pursuit of the Paralympics. Craig is very passionate about cycling and trains incredibly hard. I hope to continue documenting his journey towards the 2016 Paralympics in Rio.Group of cyclists in motion

Ellie is a second year student studying for a press and editorial photography degree at Falmouth University. The images of Craig are part of her coursework. 

Craig is taking part in Prudential RideLondon-Surrey 100 2015 for Scope this August. Follow him on Twitter  for updates.

Scope is proud to be charity of the year for Prudential Ride London-Surrey-100 2015. Join our team with free entry before 13 May to cycle 100 miles through London and Surrey. All riders will receive a limited edition cycling jersey and a hero’s reception at the finish. Public entries are now closed and the only way to join the event is with Scope. Join now! 

“I wasn’t going to do it for charity this year. But I saw Scope is the official charity – it made sense!”

On 2 August more than 15,000 amateur riders will take to the streets of London and Surrey for the third Prudential RideLondon-Surrey 100 – a 100 mile route on closed roads.

700 of those will be taking part for Scope as part of our official charity of the year team, and one of those is Carl. He knows the route having taken part in 2014 and will be hoping the sun shines, unlike last year!

“Box Hill was okay. But Leigh Hill was shut, we had to go down a diversion because of the weather and that was horrendous. So I’m hoping it’s not like that!” A keen cyclist, he’s often out with his friends testing themselves on the local hills. But there’s nothing quite like event day. “I think if you ride for a charity, the support you get on the day is fantastic. I rode with a couple of friends who weren’t riding for charity and they were completely in awe of us getting cheered on.”

Carl’s reason for taking part is his nephew. Connor was born prematurely and has cerebral palsy. Connor’s mum, Lauren, explained how they initially found out about his diagnosis through their physiotherapist. “One day I got asked to fill in some forms – I asked her for help because it asked what was wrong with him and I didn’t quite know what to say. She just said “well it’s cerebral palsy” but nobody had actually told us that. We were quite shocked. We just thought it was because he was premature, that he would catch up.”

Connor has received fantastic support from the local community. His first play group had a sensory room and it was here that he first walked – a great milestone when the family had been warned he probably wouldn’t walk or talk. “He walked properly. He was nearly three when he started, the same week as his cousin who was one.”

The family first came across Scope when they were looking for help choosing Connor’s secondary school – the local authority recognised that Connor was bright and wanted to place him in a mainstream school. But Lauren and her husband, Kevin, felt that Connor progressed more with one to one support at a specialist school. Connor went on to prove them wrong, attending the local secondary school and gaining good results in his GCSEs. From speaking to Scope and another charity called Network 81, they were able to encourage the school to make the alterations Connor needed for his education, including having his lessons on the ground floor instead of up two flights of stairs. But now, the real work begins – deciding what Connor should do once he leaves college. Connor is keen to get involved in a local community project, the Harwich Mayflower project, where he can socialise and discuss doing an apprenticeship.

Cricket posterWhen Carl saw that Scope were the official charity for this year’s Prudential RideLondon-Surrey 100, he felt it made sense to do the full 100 mile route with us. “Technically I didn’t complete it last year. It was 87 miles; it wasn’t 100 (due to the weather) so I felt a bit of a cheat.” He’ll be continuing his training and fundraising over the next few months, including a cricket night called Essex Legends, hosted at a local venue.

There’s still time to be a part of Scope’s Prudential RideLondon-Surrey 100 team. Get your place today and be treated to a hero’s reception, a massage in our chill out zone and TLC for your bike!

9 reasons to love Fridays

We LOVE Fridays! And here are nine reasons why they are so great.  

  1.  Lie in tomorrow!Woman lying in bed with an eye mask, and a ginger cat trying to wake her up

  2. It gets to 4pm and you can’t contain your excitementWoman cheering in an office and running towards the door

  3. You can head straight to the pub after work Five men drinking pints in a traditional pub

  4. The world is your oyster, everything is possibleWoman spinning around and smiling in a meadow - scene from The Sound of Music

  5. You feel like dancingCarlton and Will from 'The Fresh Prince of Bel Air' dancing

  6. Having a take away is completely acceptableHomer Simpson eating takeaway on his bed

  7. You can catch up with friends you haven’t seen all weekJoey from friends hugging Chandler

  8. If you don’t go out, there’s fun Friday TVGraham Norton puling the lever on the red chair in his Friday night show

  9. And you can play Scope’s Friday Lottery! Scrooge McDuck swimming in money

Being in with a chance to win £500 in Scope’s Friday lottery would be a great start to the weekend!  Don’t miss out, play today. 

What would you do with an extra £500 this Friday?

Amazing planet. Amazing continent. Amazing adventure.

Shirley Butler’s trek through the Sumatran Jungle at the age of 78 was meant to be her swansong. That was back in 2013 and Shirley certainly didn’t stay away from the treks for long. Last October she joined a group of Scope supporters trekking through Burma, a country isolated from tourism until very recently.

Myanmar has to be seen to be believed – it is vast, scorching sun, lush crops of fruit and vegetables, tea and coffee plantations, paddy fields and mud! One of the first things I learned in Myanmar was that the life span of a woman is 65 years, so you can imagine how I was treated and spoiled by everyone. The guides referred to me as ‘my grandma’. I just loved it.

A short journey on the train was such an experience, a huge contrast to public transport here in the UK. There were no doors so everyone had to squeeze in and hold on tight. It was such fun, until a torrential rain down pour. The ground turned to red, sticky, claw-like mud. Progress on foot was slow to say the least, especially for me.

We stayed in monasteries which had a very spiritual feel to them. Children training to be monks were seen praying and chanting on the grounds, and were happy to be photographed. The first monastery we stayed at had an amazing alfresco shower built for travellers, which overlooked a view to die for with chickens running around at will. Whilst we were showering, a monk came down to feed the chickens. A short while after another four women went to shower and the same monk went to feed the chickens. The same story was told by another group of travellers a little later on. They were either very well fed chickens  or it was a naughty monk!

All of the visitors were presented with a wristband – a red string with knots representing the support in one’s life, from a Buddha, teacher, family or a visitor. The sleeping arrangement was a large room filled with mattresses side by side- very cosy! Whilst trekking we passed a petrol station which consisted of a shelf holding old whiskey bottles filled with petrol.

After trekking for approximately 70 miles over the first few days, long boats were ready to transport us to see the sights of the floating markets, with all the hustle and bustle of everyday life.  We stopped to see the local crafts, like tobacco being hand rolled by young women, a warehouse extracting silver from the rocks and teak boats being hand made by young skilled men. Along the Inle Lake, we saw fishermen rowing the boats with their legs whilst fishing! All around the lake there houses on stilts and floating gardens.

One highlighting ‘incident’ was when I was lucky enough to have been offered a lift in a vehicle, while the rain was pouring down. The driver could only recite a few words in English which were “Okay. Hi! Out! Five minutes!” He asked me to get out as the motor was beginning to slide sideways into the ditches because of the rain. He told me “we walk for 5 minutes.” One hour and ten minutes later, my boots and I were still trampling along the muddy road.

Getting to Myanmar takes a long time by air but if you want to see all these exotic places then getting from A to B is all part of the challenge. I feel that my boots will be hung up for a while after I manage to get the mud cleaned off. Have I mentioned the mud?

Will there be another trek? Never say never as the saying goes. The fundraising continues regardless, the hill walking beckons and our wonderful planet is there for the taking.

So, has this given you the urge to pick up your boots and get discovering our world? Take a look at the overseas treks we offer.

What will you do differently in 2015?

Made any New Year’s Resolutions yet? If joining a gym or learning Spanish isn’t really doing it for you, why not take a look at some of these fun ideas.

 No lycra involved

  • Recycle that sweater. Take all your unwanted Christmas presents into your local Scope shop. We won’t tell Auntie Maureen.
  • Women-drinking-teaMake new friends. Join the online community and chat to others in similar situations. Find support, share your experiences and swap ideas with other other people connected by disability.
  • Discover your inner creativity. Write a blog for us. Tell the world about your secret hobby or a campaign you feel passionate about.
  • Enjoy guilt-free shopping. Sign up to Give as you Live and a percentage of every purchase you make at thousands of online stores will go to Scope.
  • Backgammon-and-Bridge tournamentGive us a tip. Had a eureka moment recently? Don’t keep it to yourself. Add it to our fantastic tips section and enjoy the warm glowy feeling of passing it on.
  • Take up backgammon. You might even want to join us for the 16th annual Backgammon and Bridge Tournament on 22 March.

Step it up a gear

  • Fran-and-molly-bakingBake a difference. Hold a cake stall at your workplace, school or local club and donate the proceeds to Scope. If you email us your name and address we’ll even send you a cookie cutter!
  • Rattle a tin. Collect for Scope in your local community. If you can give up an hour a week or a day a week, we’ll provide you with a collection tin, a Scope T-shirt and a letter of authority.
  • Volunteer for Scope. If you’re unemployed, volunteering can help boost your skills and confidence, and improve your CV at the same time. We’ll give you all the Woman writing a willsupport and training you need.
  • Make a will. Don’t forget to leave a little something for Scope. Find out why gifts in wills are so important.
  • Use your mobile phone to donate. Give £3 a month from your mobile phone bill. You can skip a month or stop your donation at any time.

Become a superhero

  • RideLondon-Single-man620x349Ride London-Surrey. Cycle 100 miles from the new Queen Elizabeth Olympic Park in London, through Surrey’s stunning country roads and hills. This incredible event takes place on 2 August but you can guarantee your place now.
  • Become a mentor for a young disabled person through Scope’s First Impressions/First Experiences service. Email us for more information.
  • Abseil down the Queen Elizabeth Olympic Park Orbit. One of London’s top iconic visitor attractions, take in the awesome views as you descend the Olympic Park Orbit on 7 March.
  • Become a campaigner. Want to make a change? Get involved in community campaigning. We’ll sBen-Nevis trekhow you how.
  • Climb Ben Nevis. Take on one of the highest mountains in Britain … or join a trek up Mount Kilimanjaro. Or how about six days trekking and camping in Machu Picchu, Peru?  Find out more about Scope’s trekking challenges.

Still stuck for inspiration? Visit the Scope website for more ways to get involved

Scope’s 2014 highlights

2014 has been a really exciting year for Scope – full of awkward, nostalgic, sexy and some just Breaking Bad moments. We’ve rounded up a selection of just a few of the most memorable. Let’s hope 2015 is just as eventful!

Name change

We celebrated 20 years since we changed our name
from The Spastics Society to Scope, with a Parliamentary reception. We also looked at how life has changed for disabled people in that time.

The extra costs of disability

The Price is Wrong game show bannerCan an adapted BMX for a disabled child really cost four times the amount of the average child’s bike? Well yes, it can – and that kind of shocking fact is why you all got so involved with our Price is Wrong campaign and 550 challenge, to raise awareness of the extra costs that disabled people and their families face for everyday items.

Top films

Man bending over to talk to a wheelchair userOur End the Awkward adverts featuring Alex Brooker got almost 10 million views! They helped us to raise awareness of the fact that 2/3 people feel awkward when talking to a disabled person, mostly because they don’t want to offend or are scared of coming across as patronising. But we can all get over it!

Disabled model taking off his clothes in Scope charity shopThis year, our Strip for Scope film shocked everyone with a cheeky play on the sexy Levi’s Launderette advert, featuring disabled model, Jack Eyers. It was our most successful stock campaign –  we received over 1.2 million donated items to our shops.

We also created a film featuring disabled people talking about what the social model of disability means to them, the confidence and liberation it gives them – and how it can encourage everyone to think differently about what an inclusive society really looks like.

Face 2 Face befrienders

Two parents talking in a kitchen over a cup of teaWe were delighted to open new Face 2 Face befriending services in Oxford, Coventry, Lewisham, and three London locations – Islington, Waltham Forest and Redbridge, and Newham and Tower Hamlets. It means loads more parents with disabled children can get the vital emotional support they need, so they don’t feel like they have to cope alone.

Support and information

Our helpline staff have expanded on their lead roles in specialist areas, so they can give more thorough advice to people who need it, and share their knowledge within the team. The areas cover cerebral palsy, social care, welfare benefits, finance and housing, disability equipment and provision, early years, employment, and special educational needs. We also launched a new online community to reach even more people.

Get on your bike

Not only did over 4,000 people take up an events challenge for Scope this year, but we were thrilled to find out that we’ll be the official charity partner of the Prudential RideLondon–Surrey 100 for 2015. It’s worth a whopping £315,000 to Scope and means we have over 600 places for Scope participants.

New friendsRJ Mitte posing for a photo with a young disabled girl in wheelchair

And last but not least, we were very chuffed to welcome RJ Mitte, aka Walt Junior from the hit US drama Breaking Bad to Scope. He has cerebral palsy, but he’s never let it hold him back. He spoke to some young disabled people who are currently on our employment course, First Impressions, First Experiences, to tell them how he started his career.

What have we missed? If you’re part of Scope – what have been the highlights of your year?

“Not every family that is affected by disability is as lucky as us”

Guest post from Stuart, whose twin brother Fraser has Down’s Syndrome. He is riding the Prudential Ride London 100 for Scope this year in memory of Sheena Walker, a tireless disability campaigner and former Scotswoman of the Year who helped Fraser and his family to get a better deal in life.

stuart-picOn 10 August I will be cycling 100 miles in the Ride100. More important than the physical challenge of cycling 100 miles is the challenge to raise money for Scope – a charity which I have a personal connection with.

My twin brother Fraser was born with Down’s Syndrome.

Glasgow in the mid 1970s wasn’t best equipped to deal with this. Indeed at this point most people were barely able to even talk about it. I recently discovered an official letter from the hospital following Fraser’s birth which rather cryptically refers to “Fraser’s problem”.

Support and respite care was also pretty much an alien concept at this time. One of the options open to my parents at the time would have been to send Fraser to the nearest hospital – Lennox Castle. The towers of the Castle were visible from my primary school. Nestling in the countryside next to the Campsie Hills to the North of Glasgow, it seemed like an idyllic setting.

However horror stories about what went on there used to do the rounds of the playground. Such was the reputation of the place, my parents never once entertained it as an option for Fraser. They never even visited it.

Decades on, the horror stories proved to be true as revelations emerged about people being starved, drugged and abused at the Castle.

My parents wanted something better for Fraser. As a result they faced a long hard struggle to ensure as bright a future as possible for my brother.

At this point my family was fortunate enough to come into contact with a woman called Sheena Walker – one of the most truly remarkable people I’ve ever met. Sheena recently passed away but she made a huge mark on the community she served.

As my mother noted in one of the many newspaper tributes to Sheena after her death, she was a former Scotswoman of the Year and a tireless campaigner for people with disabilities. To borrow my mother’s words: “She was such a strong person who took on the government, took on social services and anyone else she thought was not giving disabled young people the help they needed….She said she’d find a better place for her boys and other children even if she had to build it herself. And that’s what she did.”

Not every family that is affected by disability is as lucky as us though.

This is why I think Scope is so important.

Scope exists to make this country a better place for disabled people and their families. They do this by running a range of services, raising awareness of the issues that disabled people face and influencing change across society. They provide support, advice and information for more than a quarter of a million disabled people and their family members every year.

So thankfully, times have changed. The grounds of Lennox Castle are now home to Celtic FC’s new plush training facilities. Attitudes to disability have changed. Attitudes towards care for the disabled have changed. And attitudes towards supporting families affected by disability have changed.

But we cannot rest on our laurels. In the current political climate, charities are facing tough times – and they need help. Disabled people have been particularly harshly treated as a result of recent public sector cuts. I’ve witnessed this first hand – and indeed live with the fear that one day Fraser’s care package will be affected by the decisions of a government which seems at times intent on targeting the most vulnerable in society – rather than the culpable.

I am riding in memory of Sheena Walker in an effort to continue the legacy of remarkable people like her. With your help I’m raising money to help other families facing the daily challenges of disability.

You can donate to Stuart’s fundraising online and find out how he does next week on Twitter.

“I’ve talked about doing a marathon for 10 years, and this was the catalyst”: #100days100stories

Dan and Mel first shared their story in July 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories campaign.

Dan and Mel’s son Oliver was recently diagnosed with cerebral palsy. Despite seeing specialists since a very young age, they had a long battle to get Oliver properly diagnosed, including nine months’ worth of tests.

“Oliver was different to other children, and we couldn’t explain why. Because of the issues and complex needs he had, he would do things like lick the radiator and lick the floor where it was cold. You’d go out into an environment where there were loads of other kids, and it was very obvious that he was different but we couldn’t explain why. You’d put him down on the floor and he would only crawl a little bit and then he would start eating the end of the table. We laugh at it now because we understand what he’s doing and why he’s doing it, but until that point we closed ourselves off and saw fewer people. We didn’t really want to go out – not because you’re ashamed, but you couldn’t turn round and say ‘This is why he’s behaving that way’.”

Dan and Mel's son, Oliver
Dan and Mel’s son, Oliver

Mel explained that it was incredibly hard to get a firm diagnosis, “but as soon as we got one and accepted it, it made us even more proud of him. We knew he had problems, but we didn’t ever dream he’d have cerebral palsy. I even remember saying at the beginning [of the road to a diagnosis], ‘Oh yeah, but it’s not like he’s got cerebral palsy or anything, it’s not so major.’ He doesn’t look like what many people would think a child with cerebral palsy looks like. He can walk and he’s got a voice – he’s non-verbal, but he has a voice and he uses it.”

Oliver’s condition left many paediatricians guessing for nine months, with Dan and Mel persisting that his behaviour wasn’t right. “At first we went to a private paediatrician who told us there was nothing wrong with him at all. It was at a young age, but other things had been picked up by health visitors. I contacted the NHS to get him into the system and the paediatrician we got is fantastic.” Putting Oliver through months of tests was difficult on his parents, and particularly Dan. “It was certainly hard putting him through it, watching him being tested. He was getting to the point where he understood enough to know ‘Oh, it’s another person prodding me.’ He would cry as soon as somebody came near him, because even though he didn’t understand everything, he understood that things were going on. That was quite difficult.”

For Mel, she was determined to get a diagnosis. “It was really important to me. Not that it changed anything – I don’t care if he’s got two heads! But it mattered, and I can’t explain why. The moment we had a diagnosis and it had sunk in, for both of us it felt like a weight had been lifted.” Dan goes on to explain that “there were definitely more tears shed in the run-up to the diagnosis than since the diagnosis. We do not feel sorry for ourselves or wish for different things, whereas before we were searching. Now there’s no need to search – it’s difficult to get the diagnosis, but once you do it’s a lot of help.”

Dan with Oliver
Dan with Oliver

Dan and Mel are clearly both very committed to their son, persisting to ensure he has the best support and stimulation possible including occupational therapy and sensory integration. It’s clear they have an eye to the future but it is still very early days for them in terms of Oliver’s diagnosis. Getting Oliver’s diagnosis was the catalyst for Dan to take on a challenge he’d been talking about for 10 years – the London Marathon – an emotional rollercoaster or excitement and apprehension. “I went through a phase where there was lots of pressure – you just think to yourself, ‘I just can’t let anyone down on the day’.”

The couple chose to support Scope as it captured a charity that helped others with similar needs to Oliver. “It goes to helping people, that’s the main thing.” Thanks to the overwhelming response of friends, family, colleagues and strangers, Dan has now raised more than £15,000. As well as support at work, Mel explained that Oliver’s nursery did a mini-marathon. “All the kids walked round the park – they raised £1,200, and that was just amazing. I think it makes a difference that it’s his first time running, and we’ve just had the diagnosis. For us, it’s been wow! We didn’t dream we’d get anywhere near this.”

There are still places available to run this year’s Brighton Marathon for Scope on Sunday, 12 April.

Find out more about the 100 Days, 100 Stories project.

If I can complete the marathon I know that I can achieve anything

Guest blog from Neoma. Neoma is running the London Marathon for Scope this Sunday. She set herself the challenge and has been training hard to try and stay positive after suffering massive nerve damage to her arm, which has left her with mobility issues. 

Twelve years ago when I still lived in Australia I went for a routine blood test and the doctor hit an artery, which bled into a major nerve in my elbow.

I was rushed in for an operation, which we all hoped had repaired the damage fully. But two years ago I started to experience swelling and burning in my arm.

Then one day I was driving home from work and I had a series of painful spasms in my neck, shoulder and back. It was terrifying.

An investigation found that while the previous operation had provided a temporary fix, the method they had used had caused further massive nerve damage.

The doctors broke the news that I was 6 – 12 months away from losing the use of my arm completely unless they could operate immediately to repair some of the damage caused. It was really frightening.

Life changing

That was in February last year and since the operation the doctors and I are still hopeful that I’ll make a full recovery. But at this point I’m still in constant pain and I don’t have the full use of my arm.

I think that the loss of independence has been the hardest thing. My husband now has to help me with things like tying my shoelaces and drying my hair so it’s affected us as a family.

I also had to give up my regular job and go part-time in a different job because of my health problems. But the hardest time was when I couldn’t work at all, I was stuck at home, barely saw anybody and I got really down about everything.

I set myself a challenge

NeomaI had some counselling and then decided that I needed to give myself a personal goal to focus on.  Before all of this happened I was really into my sports especially netball and jogging, so I signed up to do the London Marathon this year and Scope is the charity that I’m running for.

I still hope that my situation is temporary and I don’t consider myself disabled.  But these past years have helped me understand much more about what some disabled people must go through. You just don’t realise until you’ve been there yourself.

The training has been incredibly tough but it’s really helped me to stay positive. I’m in a lot of pain and the medication I’m on makes me tired, so it’s hard to get motivated some days.  But I set the marathon as a challenge to myself, and if I can complete the course I know that I can achieve anything.

You can sponsor Neoma for her fundraising efforts or donate by texting NEMO76 and the amount to 70070.

With your help Scope can be there for more disabled people and their families when they need us most. Find out more about Scope’s fundraising challenges.

A proud mum inspired by her twins to run the marathon for Scope

Guest post from Emma who has been inspired by her one-year-old twins Ava and Louie, who both have cerebral palsy, to run the Virgin London Marathon in April and raise funds for Scope. 

My beautiful twins Ava and Louie were born nine weeks prematurely. At birth they weighed just 4lb 1oz and 4lbs and spent 29 days in the neonatal unit at Hull Royal Infirmary receiving specialist care.

Louie, the smaller of the two spent more time in Intensive Care and the High Dependency Unit. He had to be put on a machine to assist him with his breathing, but after two weeks he joined his sister in the Special Care Room.

Traumatic

Baby in intensive careIt was the most traumatic time I have ever experienced. Going into labour so early, then not been able to hold your babies and seeing them all wired up in incubators. It was horrific.

I couldn’t go into Louie’s Room when he spent time in the High Dependency Unit without my husband going in first, I was so frightened and it was really hard because we didn’t get to see Louie’s face for a week as he had to wear a mask to help him breathe.

I cried all night

When my husband left the hospital on the nights I was still on the maternity ward I would just cry all night because I didn’t have my babies in my arms. I still get flashbacks now.

Phil holding the twins Nine days before the twins were discharged from hospital we received the news from the neo-natal paediatrician that routine ultrasound scans had revealed that both Ava and Louie had developed cysts in their brains, which were likely to have been caused by being premature.

The doctor told us that this would most likely lead to cerebral palsy, which the twins were later diagnosed with. They said that the severity of the condition would not be known until later on, but they told us that Louie’s injury was more extensive than Ava’s.

The doctor broke the news to us that the ‘worst case scenario’ could be that the twins would be wheelchair users and have very complex needs.

Shock

The shock of the diagnosis was difficult to accept, our babies seemed to be doing really well in hospital and the news felt like being hit by a bus.

I can’t remember getting home that night and my husband had to call for an emergency doctor as I had a anxiety attack. What made things so difficult was the fact that Ava and Louie were still in hospital, so we didn’t have them for comfort.

It sounds terrible, but there was a period of grieving for the life that we were expecting with our first children. Without the support of our amazing family and friends I really don’t think we would have got through it. We would wake up in the morning praying that we had just experienced the most horrific nightmare, but it was real.

We got some information about how the disability may affect the twins, and I’ve found chatting with other parents on Scope’s online parents’ forum to be really helpful, it’s so much harder to talk to people who haven’t been through something like this themselves.

A brighter future

The good news is that Ava and Louie are now doing well and we have all settled into family life.

Louie’s condition affects all four limbs and only Ava’s lower limbs. These are improving with the help of regular physiotherapy sessions, and they also have on-going support from occupational therapy and the community paediatrician.

The family togetherOur consultant at the hospital is pleased with how they are both progressing and Ava and Louie are giving us the answers, positive ones, on what the future holds. We have never experienced happiness like it, they are wonderful and although they have obstacles in their paths they are two determined little people.

We still struggle and there are times we really have to fight with the black cloud that’s overshadowing all our lives, the uncertainty is hard to manage at times.

Louie had an epileptic fit just before Christmas, at the time we weren’t sure what it was and it was so frightening seeing our child in this way. We had been told due to their diagnosis they could develop epilepsy and now he has. Ava has been fitted with splints to wear on her lower legs to help her movement in her lower limbs.

We are more positive now, and milestones in their development mean so much to us. Ava is now sitting up and rolling over, and Louie has just started to roll and his sitting is improving. We celebrate all their achievements, even if they might seem small to others, they are unbelievable and we are so very proud of them!

People think I’m mad for doing the marathon

I work part-time at the council and of my friends and family think that I’m ‘mad’ to start training for a marathon when I already have so much on her plate. But I’m finding the training therapeutic.

Emma and the twinsAlthough we still have to an uncertain future to some extent, we are blessed each and every day with Ava and Louie, they are our beautiful children and each and every day they make us so happy, they truly rock our worlds and the love we have for them is just indescribable.

I am running my first marathon for my two beautiful children Ava and Louie and this fantastic charity Scope, which together with our fantastic support from our family and friends, has made Phil and I not dread the future, nor the words cerebral palsy.

You can sponsor Emma for her fundraising efforts.

Have you got your own place in the London Marathon? Join Emma and be a part of Team Scope and have the amazing feeling of making a real contribution to Scope’s work with disabled people and their families.