Category Archives: Real life stories

The doctor said ‘she won’t do anything normal children do’ #100days100stories

Micheala first shared her story with us in March 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories campaign.

Micheala was a 19-year-old city worker when she became pregnant unexpectedly with Venice. At 14 months Venice was diagnosed with cerebral palsy and the specialist told Micheala her daughter would never walk, run or dance. Now 13, Venice walks freely and loves to street-dance. In the lead up to Mother’s Day, Micheala talks about her and Venice’s journey.

Micheala and Venice together on a couch
Micheala and 13-year-old Venice

When Venice was born it was quite a tough time, I mean I was just 20. I was working for the stock exchange and I loved my job, I was earning lots of money, back then there were lots of bonuses.

Venice came early at 27 weeks, and she was in breech. She stayed in the incubator for three months. She had two blood transfusions and a little bit of jaundice, so she was under the lights for a while. Seeing Venice in the incubator was really tough. She was just so tiny.

Diagnosis

My cousin’s son has got cerebral palsy, and one day I came to my cousin’s house to collect Venice and he said, ‘Mick, I think you should get her checked out’. The day came when we had to have this meeting at the hospital, and her dad never made it – it was just me. This specialist said ‘I’ve looked at your daughter and she’s got spastic diplegia’. I said ‘what’s that?’ and he said ‘basically it’s called cerebral palsy and she won’t walk, ever, and she won’t dance, she won’t run, she won’t do anything that normal children do.’ I just cried and cried.

When V got diagnosed I had a choice to make, which was, be a city girl or be the mum that has to support this child. So I thought ‘that’s it now’ – I put work down and now it’s all about Venice.

First steps

She got her first splint at about two or three and she’d say ‘oh mum they’re hurting’ because they would rub her calf muscle. And she still wasn’t taking steps and I used to get a lot of questions at this time from other mums, like ‘ooo why can’t she walk?’

We went to a family wedding when Venice was about three. She was still in her buggy and we were having a family picture. She looked at all the other kids – they were running around – and she looked up at my mum and said ‘Nanna I just want to walk, I want to run’ and my mum just started crying and she said ‘you will Venice, you will’. And she did, she started walking at four, with the help of physio.

Leg operation

When Venice was about eight, her foot did something that we’d never seen before – it literally curled up. That’s when we made the big decision to have an operation – it was Venice’s decision also. That operation has got her to where she is today, being able to get around more freely.

They gave her about eight cuts to her left leg, a few cuts to her tendon, cuts to her calf, cuts to the bridge of her foot, cuts to the top of the foot, and the toe where it had just curled up, to correct the bone. After that there was six to eight week recovery, home with the Zimmer frame – literally a Zimmer frame – like what an elderly person would use – and a caste.

The doctor said to Venice ‘no pressure, you don’t have to go back to school, you can heal at home.’ And she said ‘no’ – she wanted to go back to school. Underneath that caste there were so many stitches – to think about it now, it turns my stomach. Any time the caste got bashed by accident, it was just tears.

Hopes for Venice’s future

Venice smiling
13-year-old Venice has cerebral palsy

I hope Venice continues to push herself and break the barriers, and not be ashamed, or feel uncomfortable. Probably the most valuable thing I want for her is to be independent and not be afraid. I’m sure I will worry if she comes home at 18 and says, ‘Mum everyone’s booking a girly holiday’. But I think the more independent she becomes, the most I’ll be able to let her do what she wants to do. But it’s still quite scary to think that I’ll have to let her go someday, just to be.

Scope’s helpline

Scope’s helpline provides information, advice and support on cerebral palsy and disability issues for disabled people, their families, carers and professionals.

Find out more about Scope’s 100 Days, 100 Stories campaign, and how to get involved.

This Mother’s Day is going to be tough

At three foot six and with brittle bone disease, raising a baby was always going to have its challenges. Last November Marie and her husband Dan became the proud parents of Mark, via a surrogate. As Mother’s Day approaches, guest-blogger Marie reflects that one of the hardest things is not having her own mum around.

Marie holding her baby
Marie with her baby Mark

This Mother’s Day is going to be tough. It will be really happy because it will be my first year of being a mum, but it will be difficult because my mum won’t be there. My mum died in October 2012, so this will only be my second Mother’s Day without her.

I think about my mum every single day. For some reason, when I am giving Mark his feed at about eight o’clock, I think about her the most. Mainly I think about how sad I am that she didn’t get to meet Mark and that she’s not here to experience what we’re experiencing.

Mark is growing every day, getting bigger every day. He’s doing more, like he started giggling in the last few weeks. It’s amazing, but there are two sides to it. At one end of the spectrum, I’m so happy because it’s our first baby, but at the other end, my mum’s not here to experience it.

I am glad that my mum knew what we were doing, that we were trying to have a baby. She was a bit worried at first about how we would cope physically, but when we explained that there would always be someone with me, she was fine.

She knew I just need a strong pair of arms to enable me to do things, because she was that strong pair of arms for so long. Now, my personal assistant and my husband Dan do the lifting for me: lifting Mark on to me, lifting him into his buggy, or lifting him from his cot. Once Mark is within my reach I can pretty much do most of the tasks for him on my own. But when something happens in life you naturally want to ring your mum and I can’t do that anymore.

It’s difficult, but now I just have to focus on being a mum to my little one and do what she used to do with me, with him. Sometimes when me and Dan bath him, if it’s a bit chilly, I put his clothes on the radiator to the warm them up and that’s something my mum used to do with me.

And if I’m ever feeling down, Mark is always there to pick me up. One of the best things is his smile. His eyes are so big and blue. As soon as I wake up in the morning I look over at him and he just smiles. And that just makes me happy all the time.

Marie is blogging about being a disabled mum for Scope, and has been raising awareness by talking to Sunday People

A letter to my mother, my brother’s carer – #100days100stories

To mark Down’s syndrome awareness week, we’re publishing this story by Emma Sterland, who works on Scope’s online community. It was first published in the Guardian, and we’re sharing it here as part of our 100 Days, 100 Stories campaign.

You knew something wasn’t right before anyone else did.

You kept calling the nurses over, but he was always asleep when they came. You wanted them to see his eyes, but he always had them closed. They smiled and put it down to new-mum nerves, but you knew.

“Your son is a congenital idiot,” were the doctor’s carefully chosen words. They are as sharply etched now as they were 54 years ago. “Best to wipe the slate clean and start again.” You were young and newly married. This was 1956 and mental institutions were still the norm. No one expected you to take him home. But you did.

You had to feed him round the clock, he was so slow to eat. It took him a long time to reach the milestones other parents took for granted – rolling over, sitting, holding a spoon – but you knew he’d get there. And you delighted in his achievements, no matter how small they might have seemed to others.

He was “ineducable” but you taught him to read and write. You showed him how to keep a diary and encouraged him to write thank-you letters. He was a little clumsy, but he loved to help. You’d give him a big bowl of peas to shell or have him rolling socks into pairs.

Having a child with Down’s syndrome was nothing to be proud of then. But he was your firstborn and you were proud of him. When a friend asked him to be the page boy at her wedding, you wrote an article in this newspaper about it.

He was seven when I was born. By then, you’d learned to ignore unkind remarks, so when a neighbour peered into my pram and said, “See you’ve got it out of your system then,” you just smiled.

You say he adored his baby sister and was always eager to hold me. He was the perfect play companion – patiently returning toys I’d chuck out of my cot. I have happy memories of camps he and I built together under the dining room table.

When my younger brother was born, your family was complete. You had three of us to look after, each with our own separate needs. You made it look effortless, but I realise, now, how much work you put in.

I didn’t really mind people being curious about my brother. I never felt ashamed of him. Even as a sensitive teenager, I wouldn’t flinch when he wore his Batman costume to the beach or stood up in the cinema to wave at his favourite characters. I took my cue from you. It made him happy – where was the harm?

But sometimes I just wanted to be like everyone else. You gave me the space to do that. Somehow you made us all feel special and important. I know, from hearing other people’s experiences, how hard that can be in families with disabled children.

You taught me some of the most valuable lessons I’ll ever learn. You showed me that everyone has their own contribution to make, whatever their ability. You taught me about tolerance and compassion. And, above all, you showed me how to get on with life, even when it throws you the unexpected.

At 78, you’re still caring for my brother. You take him to his clubs and his horse-riding, and you massage his arthritic feet. You’re still proud of him after all these years. You show me things he’s made at his day centre and tell me funny things he’s said. You should be taking it easy now, but you’re still a full-time mum.

I know there are many others like you, who’ve had a lifetime of looking after their sons and daughters – a lifetime of putting someone else’s needs before their own. I salute you all.

Find out more about 100 Days, 100 Stories, and read the rest of the stories so far.

 

There are still people who believe disabled people shouldn’t be parents

Guest blog from Marie, who thought she may never have children because of her disability. After six years of waiting and exploring different options, Marie and her husband Dan became the proud parents of Mark in November. Thirty-one-year-old Marie has brittle bone disease, and in the words of her husband Dan, “could break her arm reaching for a kettle”. Marie’s brother died from the same genetic condition after falling from an unsuitable wheelchair. A wheelchair user herself and with a fused spine, having a baby was never going to be straight-forward for Marie.

Marie holding her baby Mark
Marie with her new baby Mark

When Dan and I first got together I was quite honest that I didn’t know if we could have children. Some women, even with my severity of brittle bones disease, can have a baby without a problem. But I have a severe spinal curvature and a heart condition as well, which means it would be dangerous for me to carry a baby to term.

We always said that we would adopt, but when we looked into adopting, we discovered they make it really hard if you’ve got a disability. I felt devastated. I thought that was it; we’re not going to be able to have children. But it was always at the back of my mind that we wanted a child. I even, at one point, thought about risking it and trying to carry a baby myself, but I knew it would have been too much for me.

It was a friend who suggested going to a surrogacy organisation. When we first went to talk to them I was worried; I thought they wouldn’t touch us because of the disability. But they were great! They didn’t give us any indication that it would be more difficult as a disabled person. I thought we would have to wait years and years for a surrogate to choose us, but we waited about 18 months.

Obviously there are things that have been and will be difficult. The surrogacy has been quite emotionally difficult for me. I feel guilty sometimes that someone else had to go through all the pain and sickness for us to have a baby.

Marie and Dan pushing Mark in a pram
Marie and Dan taking Mark for a stroll

I’m also anxious about what people might think. There are still people who believe disabled people shouldn’t be parents and we’ve had some really strange reactions from people. When Dan and I went to John Lewis to buy the cot, for example, they didn’t know what to do with us. They were like, “Is it for a friend?” They didn’t know what to do when we said it was for our baby. They were stood there staring at us for like 30 seconds.

There are so many things we don’t know as well, because we’re first time parents. We had a few sleepless nights, before Mark was born, worrying about things. We went on a First Aid course, so we know what to do if he’s choking or something. We’ve wanted a baby for a long time but it doesn’t quite prepare you. Your life changes so much.

Like all new mums, I’m exhausted, but having Mark in our lives is just so amazing. Dan and I are learning more about Mark and being parents everyday – it’s an adventure!

Marie is going to be blogging about being a new mum over the coming months, and has been raising awareness by talking to Sunday People

This is my story. I was bullied because I’m disabled.

Trendsetters is a project run by Scope for young disabled people.

Anti-Bullying Week calls on children and young people to take the lead in creating a future without bullying – using new technology to promote positive communication rather than being held back by cyber bullying.

Bullying is something that many of Scope’s Trendsetters, a group of disabled young people, say they’ve experienced.

We ran a workshop with the group about bullying this summer.

Young disabled people at bullying workshop

Bullying causes bad feelings. We threw these into a bin.

Rubbish bin representing bad feelings

One Trendsetter wanted to use technology to share her experience of being bullied. She wanted to send out a positive message about stopping bullying by creating this short film on bullying.

Her message is: “If you are being bullied, or know someone who is, tell someone.”

Do you need someone to talk to?

ChildLine – 0800 11 11

ChildLine is a free, confidential support service. Their staff speak to thousands of young people every day – you are not alone. Phone 0800 11 11 or visit the ChildLine website.

BeatBullying online help

Get help and support from the BeatBullying online mentors and counsellors, whenever and wherever you need it. Visit the BeatBullying website.

Are you a parent, carer or teacher looking for advice?

Kidscape Anti-bullying helpline – 0845 205 204

Helpline for parents or carers. Advisers are available Monday to Thursday from 10am to 4pm. Call the helpline on 0845 205 204 or Visit the Kidscape website.

BullyingUK and Contact a Family

Get advice if your disabled child is bullied. Visit the BullyingUK website.

Anti-Bullying Alliance

Get Anti-Bullying week teaching materials from the Anti-Bullying Alliance and resources from BeatBullying.

Share your tips

Share your tips on how to beat bullying in the comments. Here are some positive thoughts from the Trendsetters to get you started:

“Be a strong person within yourself, believe in yourself and always [have] confidence in expressing your emotions.”

“Bullying can [happen] anywhere so don’t let anyone take advantage of you. You have the right to say no to anything, and you have the right to be yourself.”

“Don’t let people judge you just because you’re being you, and you shouldn’t stop being yourself just because someone doesn’t like you.”

 

I’m an endurance athlete. With one leg. #100days100stories

We first published Chris’s story in 2013, and we’re sharing it again as part of Scope’s 100 days, 100 stories campaign. Four years after an awful motorbike accident, Chris Arthey took part in his first marathon as an amputee. 

Chris taking part in Run to the Beat 2012Hi, my name is Chris Arthey and I’m an endurance athlete. With one leg.

In 2008 my wife Denise and I both lost our left legs in a road accident. With lots of encouragement and modern technology we’ve been able to get mobile again.

Running was, and is once more, a big part of my life. In 2012 I completed my tenth full marathon. It was my first as an amputee. In this ‘revised configuration’ I’ve also competed in five triathlons and four half-marathons; in one of those I managed an age-group (55+) second place against able-bodied runners, which surprised a few people – me included!

My daughter Miriam was there to cheer me on in the 2012 marathon, and decided that she wanted to run a half-marathon herself. Because I’m a proud Dad I promised that wherever I was in the world I would fly home to London and we would run it together. So we signed up to raise funds for Scope in Run to the Beat and I travelled back from Texas for the event. We had a blast as a Dad-daughter team.

Chris and Miriam at the finishWe wanted to support Scope because of the outstanding work they do for disabled people. When you have a disability it’s very easy to get downhearted and frustrated, but support and resources can transform this.

Denise and I have been very fortunate to survive and put our lives back together. Take a look at our short biographical video. It’s good to be able to encourage others in the way that we have been encouraged. And to be able to build more family memories with Miriam and our two sons. Every day is a gift.

If you’ve been inspired by Chris and Denise’s story to take part in an event for Scope, take a look at what we have to offer on our website.

Find out more about 100 days, 100 stories and how you can get involved

Are you limited by your challenges or are you challenging your limits?

When Team Scope member Mike Jones contacted our events team and told us he is taking part in the Ironman Sweden at Kalmar in August for Scope, we were blown away by his determination. Over the last two years he has attempted Ironman Wales but has been unsuccessful – any competitor will tell you that the exhausting event will bring out your weaknesses and for Mike it did just that. 

After enduring foot pain throughout the event, and following discussions with his GP, Mike was referred to a Neuromuscular Consultant who confirmed a long-standing problem that has been masked since child-hood, only materialising in his early 50’s. Mike has kept his own blog over the past few months as he trains for the event whilst searching for a firm diagnosis of his condition – he has recently had tests for Cerebral Palsy and Charcot-Marie-Tooth disease – but here is an extract from his most recent post as he reflects on his latest endurance events.

From LLanelli to Eton, Nottingham to Port Talbot

I think my theme for the last few weeks must be “Another Town, Another Train(ing) race”. This has seen me travel from Llanelli to Eton, Nottingham to Port Talbot to take part in three endurance events in 13 days, some would say “burning my bridges” but it was something I needed to do. The first of the three was at Eton Dorney, this was for the Human Race Open Water Swim Series, the 10K swim. Looking back I was so glad that my open water training had started two months ago in North Dock, as even I would admit on the day it was cold.

Mike Jones

A six day turn around and it was off to Nottingham for the inaugural Outlaw Half, a Middle Distance Tri based in and around the National Watersports Centre at Holme Pierrepont. There were a few areas of my preparations that I wished to try out ready for Kalmar. So time was not a goal for the day, completion yes. The swim, which was a simple loop, went without a hitch. The bike leg went as expected and again the plan was to pace myself and not get carried away with speed / time if I was feeling good. The course was good, not flat but with only one part that could be classed as a hill. So on to the half marathon, well what can I say –  it started off well! However after about four miles the problems with pain in my feet returned so it was in to the familiar survival mode to ensure completion, which has been the normal now for a few events. This continuous stopping was (is) causing problems with me getting into any sort of rhythm. The positive is that I now know something about the medical condition that is causing this problem, so all I need to work out is a plan of action for future events.

A potential solution

One consideration is to change the way in which I tie up my laces, at present the use of elastic laces with my Pes Cavus feels that I am wearing an elastic band around my feet so not getting any relief. It was due to the number of times I was taking my shoes off to rub my feet that this style of laces where introduced, so going to replace with normal laces using a non-traditional method to lace up. Also what I am now considering is instead of pushing on until the foot pain becomes a problem is to build into my run plan stops to self-massage my feet before it gets to the unbearable pain level, this may mean a short stop at regular intervals no matter how I am feeling.

The Future

At present I am still confused over the results of the medical tests over the last few months, as all I am getting is the observations from these tests. What is confusing me is there is no definitive condition being diagnosed other than a “Neuromuscular Condition” which is long-standing – this term is so general it seems someone is afraid to put a tag on the condition. So the saga of “Atrophy of the Thoracic Spinal Cord” along with “Upper Motor Neurone” signs goes on and on and on. The wait for further appointments continues and it feels at present a race against time for me to plan for the future, but as the mantra goes “you’re never a loser until you quit trying”, and guess what my plan is. It is at this point I start wondering what and where the months will take me – I have a dream.

With little over 4 weeks to go Mike is clearly determined to take part in the event and give it all he can, firmly following the Ironman’s mantra “Anything is Possible.” We wish him all the best as he is also fundraising and running for Scope in the Great North Run this September.

If you’ve been tempted to take part in a triathlon or endurance event then make sure you check out what we have to offer.