OICAN Outdoor Event
The OICAN event was organised by the BBS, and when I first saw this post, my curiosity overflowed out of control and I rushed to the BBS and the Calvert Trust websites to do all the research I could. I was blown away by all the amazing and exciting things wheelchair users and other people with disabilities could do. These included cycling, swimming, abseiling, rock climbing, archery and many more.
The staff were amazing and very accommodating. They were able to keep a delicious evening meal for us as we had arrived late. After we ate, staff member Rory gave an introduction and a tour around the building and gave us an update on what we would be doing the next day.
When I first arrived at the centre, I was extremely anxious thinking I wouldn’t be able to access the building or wouldn’t be able to move around on my own. Little did I know that my doubts and worries would dissipate as I entered inside and was shown to our room. I was happy to see a comfortable electric bed, a sink and automatic doors everywhere which made me feel free to explore this place which would build my confidence as an individual.
Later that evening everyone headed upstairs to the hall and sat around together playing pool, getting drinks from the bar and catching up till past midnight. To be able to socialise in this was really amazing.
The Adventure begins!
On Saturday everyone had an early rise and when entering the cafeteria, the smell of breakfast was very welcoming.
We split into 2 groups with a guide and all headed off to do our activities, one group did archery and the others did the zipwire and abseiling. Our group did archery and we went outside to a little field and everyone was able to participate effortlessly because of a special bow that was designed to support the participants comfortably. This was a first for me and the feeling that it created was one of amazement.
After lunch our groups switched to the abseiling wall and the zipwire. For the abseiling wall they had a harness that can also be used in a special wheelchair that buckles you in and lets you sail down the side of the wall, which was really high!
Also, for the zipwire you use the same harness, unfortunately this time the harness was uncomfortable for me to use, but I do not regret trying it and hopefully next time I will be able to go all the way.
On Sunday morning our first activity was cycling. We all walked down towards the lake and boat house, some of us took a little golf cart. We were given specially adapted bikes, which I was able to transfer onto. We had such an amazing time riding around the lake. Later that day we took part in a challenge course which was something we could all join in together. All the mini games we played required us to work together and use our communication skills to reach our goals. After the challenge course we made our way to a little area in the woods for bushcraft. The guide taught us how to make a fire and how to also make popcorn! Later that night we had dinner and returned to the hall for karaoke night and drinks.
This weekend was something beyond my wildest dreams, I can’t wait to have the chance to return and in the end we all agreed that #OICAN!
You can see the full OICAN Outdoor Event Image Gallery here.
Shazz writes a blog on how she has chosen to fundraise for a wheelchair in a way that she feels comfortable. Using her voice and telling her story.
Focusing on Fundraising
As a person that has always strived to be seen as `normal` as the next person by living as normally as I could, I have always struggled with accepting help, but especially fund raising for myself. I have raised money for animals, braved the shave where I raised £530.95 for MacMillan, and this year £209.20 for the Samaritans Brew Monday.
Let`s face it us OI crew are not all built the same, and most of us are not built like your average Joe. I myself am only 125cms/4.2”, with my barrel chest and S shaped spine, even after being shish kebabbed at 15ys in RNOH Stanmore. As a child I had big hands and long arms and was told I would have been 5.9”, how disappointed was I when all I wanted was to reach 5 feet!
The right equipment
I had an NHS wheelchair as a child but only used it if necessary. When I became a full-time wheelchair user I was assessed and given another NHS wheelchair, but it caused me increasing pain in my neck and shoulders because it wasn`t the right size. The wheels were too big, I was constantly rolling my shoulders to push myself round. Then our amazing BBS stepped in, and before I knew it, I was measured and kitted out with a light weight and beautifully yellow set of wheels.
Ten years ago, my wheelchairs had had good lives, and been very well used for holidays, dog walking and chasing after my son, stepson and nephews. I began fundraising to help the BBS raise the money, and my friends and the village I live in wanted to help. I am from that generation of the collection box statues of a child with a caliper on their leg that stood outside shops looking sad. As a child being close to those child sized statues it raised shame within me, a lump in my throat; I knew at that time that`s how people saw children like me, as something to be pitied. With this feeling never fading, I try to mask the uncomfortable feeling of any fundraising being about me by placing all the focus on about helping the BBS, which to me it is. However, the village organisers put up my picture, my name, my story with phrases and words that made me cringe; when I pointed out how uncomfortable I felt about it all I was told not `to be silly, that it was a good thing. `
That was ten years ago. I had my indoor manual wheels replaced last year by the BBS; now my outdoor Salsa is starting to show wear n` tear and has been unpredictable when out. Without all the fanfare and drawing attention to myself I am quietly raising money to help and have so far raised £580. My local NHS wheelchair service gave me a voucher last year for my manual, and there`s only one voucher per five years for only one wheelchair, so that`s more money to raise. The clinic won`t provide a OT assessment because it`s for a private wheelchair and not an NHS one, so that`s even more money to raise. I have done one radio interview, but they failed to put up the fundraiser on their website, and on 23rd June 2022, I do another radio interview for another local station.
I am in control of steering the conversation, with my voice I can show who I am and that I am a strong minded, intelligent human being and that I am fundraising for the charity that helps us all to keep our independence and dignity. It`s a fine line to jump off the pity train but still maintain the momentum for the equipment we all need to live our lives, but if we all do it in ways that still keeps us comfortable and seen as individuals, then we are doing great!
Sharon shares her story on showing the world what she can do #OICAN
“Sharon, you can’t…” Actually, I can!
Born with Brittle Bone Disease in the 70’s I grew up hearing “Sharon you can’t” too many times to mention.
Sharon you can’t run. Sharon you can’t join in. Sharon you can’t climb that. Sharon you can’t..
It was always sad to hear, but I knew everyone throughout my childhood meant well and wanted to protect me from another fracture. By the age of 17 I had had roughly 35 fractures and I knew all too well the pain and time required to heal and I’m sure I had exhausted my close family and friends who had helped me through all the visits to hospital and operations to fix broken bones, especially my poor parents and grandparents.
However, I seemed to gain from this experience and instead of letting it hold me back, it seemed to give me an energy from somewhere to find out what I could do in life and to ensure I did my best to achieve great things. Changing the voices from Sharon you can’t – to Sharon you can!!!
Although I missed a lot of school growing up due to time off for fractures, I managed to graduate from university with a 2:1 honours degree and become an accountant. I’m currently working in a global oil and gas company in Glasgow and I just love my job.
Although fearful wondering if my body would be able to bear a child, I gave birth to a beautiful son called Ryan who avoided the 50% chance of me passing on OI to him. He is 16, doing great at school, enjoys playing football and is heading to being 6 foot tall.
I also help a lot in my local community of Dumbarton including volunteering at a local youth group. I’m treasurer of a local youth football club, and I am also on the Dumbarton Town Centre Forum promoting shop local campaigns and encouraging local business.
I also enjoy fundraising and obviously as I’m not one to throw myself out of aeroplanes or down the side of buildings, I found a challenge that many able-bodied people wouldn’t be able to do – I’m completing a sponsored fire walk in May. Wish me luck!
Other than the Blue Sclera, I do not have any visible symptoms of OI. It is only obvious when I am healing from fractures. (I now have a tally of approximately 50 fractures, and this was especially apparent in 2012 when I managed to fracture 4 limbs at once during a simple fall onto the pavement.) I therefore most of the time think of my condition as a hidden disability. I decided to try to raise awareness of OI and other hidden disabilities within my company and I’ve recently joined their Diversity & Inclusion Committee where we are putting together an awareness campaign throughout our UK offices to recognise, celebrate and understand hidden disabilities in the workplace. I’ll certainly be promoting Wishbone Day in May to raise awareness of OI and how from weakness can come strength and employing disabled people can add so much to a company.
I do believe that with any challenges in life, you need to recognise your limits, but understand that there are so many opportunities out there and all you have to do is search them out and go for it!
This week we’re talking about Rare Diseases Day, and of course – it’s our time to shine. This is our time to talk about Brittle Bones to everyone we know/don’t know because that’s the whole point isn’t it? This year for Rare Disease Day I wanted to talk about the contrasting experience of medical treatment from child to adult as someone with Brittle Bones (OI).
When you’re young, tiny and cute everyone is interested in you – people and experts ask you questions and coo at you and your wheels for a bit. And I’m not going to lie – I lapped it up. I used to love hospital appointments/wheelchair appointments because it was a day where I saw specialists who could tell me that I wasn’t on my own with certain health problems and that there were options to make life easier.
But as we get older – in fact no – when you turn 18, boom you’re an adult. I noticed that adult services just weren’t the same after this. I ended up teaching the experts about brittle bones and it felt more like a classroom where I was the teacher.
I really noticed a shift when I turned 22 years old. I had a dodgy hip for 6 months, was going back and forth to local hospital appointments. However doctors told me it was ‘just muscle pain’. At the same time my wheelchair broke and I had to resort to a cheap wheelchair on eBay to get around and to work. With these two things going on, my pain and dependence increased and my mental health rapidly decreased.
Rare Disease Day’s
This is why we need to support days like this, to increase the knowledge of rare diseases so we don’t have to keep pushing for basic treatment and services. It takes a lot of mental energy to keep explaining pain to different people and being the expert on your own health. In an ideal world we shouldn’t have to have a different experience when turning 18. I’d like to see an improvement to adult services for adults with OI because ultimately, we have hobbies to enjoy, jobs to work and lives to live.
On the 6th May, the Brittle Bone Society held a Parliamentary Reception in the Houses of Parliament, as part of the Brittle Bone Society’s 50th anniversary celebrations. Generously sponsored by Lord Shinkwin, who has OI himself, the Reception brought together various healthcare professionals, senior politicians, and was held to present Achievement Awards to a number of NHS Trusts and Hospitals, for excellence in Paediatric services, Adult care, and research and innovation in OI. Each award was presented by an MP accompanied by a BBS member, including your very own BBS guest bloggers for the year – Shani, Samantha, Gemma, and myself.
The reception was a huge success, with a great turnout of BBS members, supporters, peers from the House of Lords and MPs. It was a real honour to present the Achievement Awards to the doctors who attended to represent their NHS trusts, each of whom are known and loved by so many of us in the OI community, and who have dedicated their careers to helping people with OI not just to live, but to thrive, achieve, and aspire.
It was also fantastic to catch up with so many familiar faces, including 5-year-old Max, who came along with his mum Leanne to present one of the awards, and was given his very own Houses of Parliament teddy bear by one of the MPs!
Chaos at Westminster Palace
Despite the grandeur of Westminster Palace, it’s never a true BBS event without at least a few of us causing chaos. My mum set the bar high when, upon being asked at the entrance whether she had any sharps in her handbag, she presented the security guard with her miniature Swiss Army knife keyring, at which point she was classified as an ‘IC1 female in flowery dress with unlocked blade,’ and had to be escorted off to have it confiscated by armed police. “At least it’s not locked,” said the policeman, “Otherwise I’d have had to arrest you.” Oops.
Two hours later, on our way out, more chaos ensued – with Yvonne Grant trying to come down in one lift, Gemma trying to go up in another, my mum and me stopping to chat to her MP, and Leanne and Max having disappeared into the gift shop – our exasperated Palace escort bellowed, “EVERYBODY STAY WHERE YOU ARE.” A passing Angela Eagle looked slightly aghast at the scene. We did eventually all make it out in one piece, although I’m not sure we’ll be invited back – sorry, Lord Shinkwin!
BBS 1958 and Present Day
When she’s not being escorted by armed police, my mum, Jane, was actually one of the very first members of the Brittle Bone Society, back when it was set up by Margaret Grant in 1968. Back then, my mum and her family felt like they were the only people in the world living with OI. She still remembers meeting other people with OI for the first time in Walsall, in the late ‘60’s, and showing off their double-jointed party tricks.
In an age of Facebook and Google, it is now much easier for families with OI to research the condition, and to connect with other OI-ers, but the Brittle Bone Society remains a lifeline not just to new parents, but also to those of us who’ve been living with OI for decades. After dinner and drinks on the Southbank that evening, with Gareth and me ‘hitching a lift’ by holding on to the back of Gemma’s chair, and Richard and Shani nattering away behind us, I couldn’t help but reflect on how truly lucky we are to have one another. The doctors we recognised at Parliament are fantastic, but I also owe so much to the experience, understanding, and advice I’ve received from other BBS members over the years.
There are no words for the feeling that comes from getting to spend time with our wonderful, crazy, beautiful OI family; the feeling of total comfort and familiarity; the feeling of being, for a few hours, totally ‘normal’. Thank you so much to Lord Shinkwin and the Houses of Parliament for hosting us, thank you to the doctors who work so tirelessly to help us reach our potential, and thank you to the Brittle Bone Society – for everything.
While our minds and lives are being shaped by COVID19 it’s easy to forget the other important aspects of our health. It goes without saying good health is one of the most important things in life and for those of us with a rare condition it’s even more important we know and listen to our bodies.
The one thing we all have control over (usually!) is food and I’ve always believed in the saying ‘you are what you eat’. I don’t believe in faddy or restrictive diets because they are hard to maintain and nutritionally poor. Food is one of life’s pleasures and the more variety you eat, the better it is. There is no such thing as a ‘bad’ food because in moderation everything has a value. Of course, if you have an allergy or intolerance you need to take special dietary advice. As OI women, we need to build our bodies and immune system up from an early age to keep as healthy as we can throughout the different stages of OI life. Keeping iron levels up is very important, as anaemia is quite common in women, particularly for those with heavy menstruation. Try and include iron rich foods in your diet. Portion control can be difficult especially if you are small and not able to exercise. Putting on weight can be problematic and not easy to lose. On the reverse side, some may find it difficult to maintain a healthy weight either due to lack of appetite or the lack of stomach area. I find it increasingly difficult to eat average portions as my severe kyphosis and scoliosis act as a natural ‘gastric band’. I therefore try to eat little and often to avoid that bloated feeling. It’s all about adjusting what is right for you without compromising your nutritional needs. Maintaining a good weight is not only beneficial to your bones but health in general.
Exercise and Wellbeing
Although exercise with OI can be difficult we can all exercise to a certain degree. When I was laid in a hospital bed with two broken femurs I clearly remember the Nurses passing my bed saying, ‘Keep wiggling those toes!’ I guess any movement is better than none!
Exercise not only benefits our bodies but general wellbeing as well. I recently ‘googled’ wheelchair exercises and it’s pleasing to see how many YouTube videos there are. I particularly liked one for Tetraplegics, where four people in wheelchairs exercise to music. It’s not too strenuous and I find it a fun ten-minute workout. It makes it even more enjoyable when you feel part of a team.
However restricted your ability to move is, it’s very important to keep your lungs clear. Again, there are good airway clearance programmes online, but one of the easiest ways to exercise your lungs is singing, humming or whistling. Anything that gets the lungs working. If you can’t join a choir or singing group, just sing along to the radio. It’s very uplifting!
Smear Tests and Mammograms
There are a number of tests, as women, we will be called up for. The first one being the smear or pap test. This can be quite a worrying procedure when you have a disability. This is where you need a good professional that will put you at ease and be prepared to accommodate your particular needs. Sometimes just getting on to the examination couch can be a struggle, so you need one that adjusts in height and assistance to get on and off if needed. The usual positioning for the test may not be possible if you have pain, cannot lie down or bend your knees up. You will have to work out the best position that allows for an accurate test but also done with your safety in mind. I had one nurse who struggled with my smear and then angrily snapped, ‘in future get a doctor to do it!’ I left feeling it was my fault I didn’t conform to the ‘normal’ body shape. However, the next time I went I had a lovely doctor that understood my need and we ended up with me on my side and her stretched across the bed. Not conventional, but it got the test done! It’s all about communication and being treated with respect. Sometimes a test is not possible due to severe scoliosis or the cervix being tilted. If this is the case an abdominal ultrasound or MRI can be considered. Remember we may be challenging but there are options, so don’t be put off.
Other than self-checking, Mammograms are also really important, and the radiographer will be used to making adjustments for disabled people. The equipment is quite versatile and can be lowered in height, but OI can post additional problems. You have to be able to press your chest very close to the metal plate and if you are pigeon-chested, as I am, the risk of a rib fracture has to be considered. In my case because I have quite fragile ribs it was considered too high a risk, so I am offered an ultrasound instead. This easier procedure still allows the specialist to check for abnormalities.
Both these tests are important, so if you get a letter of invitation it’s an opportunity to discuss with your health provider any concerns you may have prior to the appointment.
At this time of year, whether you’re a romantic or not, you can’t fail to see all the cards and gifts on display for Valentine’s day. When I was asked to write about Partners, I thought, ‘Wow, that’s a difficult subject’, yet I’m sure most of us share the same desire – to be loved.
Of course, love comes in many guises, from partners, family, friends and of course our pets. You only have to see the close bond there is between our BBS members and their assistance dogs to witness that. If we are very lucky, and I do consider myself that, we meet someone special to share our life with.
How I met Martin
In the days before Tinder and other apps you generally met people through friends, education, work or social activities. I had some great male colleagues when I started work but when a friend of mine suggested to one ‘Why not ask Elaine out?’ he replied, ‘I’d never want to hurt her.’ Which was both sweet and yet equally annoying. I think it’s fair to say disability can be scary and it’s far easier to remain friends than plunge into something you’re unsure of.
During those early days I did date a couple of nice guys (and some not so nice!) but never my Mr Right. Then browsing through a magazine one day I came across an advert ‘Disdate – a penfriend/dating agency for disabled and caring people’. Why not, I thought? Within a few days of joining I received three names and addresses. One from London, one form Torquay and the third, Martin Rush from Southampton. Living in Dorset at that time, I decided Southampton was the closest, should we ever decide to meet. I wrote a long letter about myself and enclosed a photo.
Martin was very surprised to receive my letter as he had asked for his name to be removed a few months earlier. I like to think this is where fate stepped in! He sent me a lovely letter and photo back explaining he had Hypochondraplasia, a from of dwarfism, and was only 4ft 6ins tall, but otherwise fit and healthy. Through our letters we found we had so much in common. We were the same age, loved being with family, enjoyed travelling and for me the ‘piece-de-resistance’ he had a cat called Sweep. I love cats!
The more we wrote, the more we got to know each other. After a couple of months Martin asked if we could meet up. I was a little apprehensive but excited at the same time. I chose a pub in Poole and sent Martin directions. He watched in amazement as I moved from the driver’s seat, over the passenger seat and swung my wheelchair out the back of the car on a hoist. He later admitted he’d never seen anyone exit a car in such a unique way before! That day we chatted away with ease and arranged to meet again two days later for Sunday lunch.
Our friendship continued to grow, and we met up as often as our jobs and distance allowed.
From friendship to love
One winter’s day while walking through Poole Park I said, ‘I’ve got really cold hand’s’. Being the gentleman, Martin took off his gloves and gave them to me. ‘Let’s go to the café’, he suggested, ‘A hot drink will warm us both up.’ As I handed back his gloves he asked, ‘Have they warmed up now?’ and then slipped his hand into mine. At that moment I knew this was the hand I wanted to hold for the rest of my life. It felt so right. From that day on our love for each other blossomed. We spent hours talking on the phone, wrote letters and cards (which we still have!) and when I wasn’t working I went to Southampton to stay with him and Sweep. When Martin asked me to marry him I had no hesitation. We married on 17th April 1993 and I have to say it was the happiest day of my life.
Making it work
My Mum once said, ‘You make a great team.’ I have always loved housework, so it was never a hard role to take on. Martin and I manage it between us as we both love our home. It’s about understanding each other’s abilities and working together. It’s fair to say Martin has had to take on more in the past few months as I have ‘slowed’ down a little. As we know having O.I. brings good and bad days but my love of cooking continues, even when my energy levels don’t! If I could give any advice to a happy relationship I would say, be kind to each other, enjoy what you have and try to keep a sense of humour, because there are days when laughter is definitely the best medicine!
On the 23rd of October 2020, I was asked if I could represent the Brittle Bone Society by CEO Patricia Osborne to attend to a panel meeting, Review of Adult Social Care which was held over zoom on the 26th October 2020. The ALLIANCE organised The Review of Adult Social Care in Scotland which was announced by the First Minister as part of the Programme for Government on 1st of September. The review was chaired by Derek Feeley and will report by January 2021.
The aim of the review was to recommend what is to be improved for adults in social care throughout Scotland. In terms with the outcomes achieved by the people that use these services, families and those who work within the sector e.g. carers and the experience of people who work in adult social care. This review was taken from a human rights based approach.
The discussion at the meeting, was about transitioning young adults from children services to adult services to find out what needs to be improved and developed over the next upcoming years. I mentioned about my experience transitioning from services.
My experience through Adult Services
I was transitioned to care providers at the age of 16, when I was given the opportunity to experience what adult services was going to be like, even though I was still under the children’s services. The social worker put me forward to try out a couple of services within the sector for example Hazelhead and The British Red Cross. I was with Hazelhead for a couple of months, however, they were not suitable for my needs as they were not able to work with people who have physical disabilities. Therefore, they could not support with personal care needs and were unable to transfer me from my bed to wheelchair and vice versa. Myself and my parents felt this was not suitable for us as it was holding back my independence which meant my mum and dad could not leave me alone with my support. The British Red Cross stepped in who gave me a full new outlook on life. This care provider changed my life, giving me the opportunity to have the independence I desired, and my parents felt confident with the service being provided. The British Red Cross provided me with personal care and social support during weekdays and throughout the weekends. I was with The British Red Cross for 8-9 years before transitioning to Quarries in 2018. Currently, I am in the process dividing my care package with AILN (Ayrshire Independent Living Network) to better suit my requirements.
In 2013, I was assessed as requiring a 24 hour care package which has given me more support and an independent life. Without this 24 hour care package I would be unable to care for myself and my life would have a different outlook. I would be unable to attend to social events and activities with family and friends.
What can be improved in Adult Services
Transitioning over from children services to adult services is a daunting experience as the services provided differ greatly as the needs of the service user progress through adolescence. In my experience, the communication between social worker and care provider could be improved to allow a steady transition. The social worker could also have researched the care provider services to ensure it met the service users requirements.
Recently, I have noticed the amount of paperwork the support staff have been asked to complete has got out of control which takes away precious support time from services users. This bothers me because I have to allow staff time away to write daily reports and complete other daily paperwork.
Support from team leaders and management to the service user is much less forthcoming when transitioned to adult services. This is an area which can be improved as support from management would allow for issues to be dealt with more effectively and allow for positive relationships to form between management and the service users.
Overall, my experience of transitioning between children services to adult services and between care providers was steady and carefully considered over the years. Myself and my family received support from CHAS (Children’s Hospice Association) throughout these transitions which was a great source of support for all involved.
Independent Review of Adult Social Care in Scotland
To see the full Independent Review of Adult Social Care in Scotland click here: https://www.gov.scot/groups/independent-review-of-adult-social-care/
Mothers Day to me has always felt a bit like a date on the calendar that often gets left on the back burner. That might sound mean, but you see, my mum’s birthday is March 11th. So, much like those who have a birthday around Christmas, I think perhaps we have been guilty of overlooking the occasion of Mothers Day.
With that said, let me tell you about my mum…
As I have heard her explain it before, she was born with a ‘rogue collagen gene positioned on the double helix’. It wasn’t until she was 3 years old though that an Orthopaedic Consultant eventually dubbed her with the diagnosis of OI. I can only imagine what a shock it must have been for my Grandma, discovering her fourth child had an incurable disability which was responsible for the fractures that came before, and the fractures that undoubtedly followed.
Dr’s believed my mum wouldn’t walk, would probably never marry or have children, and thought she would struggle to find work and be independent. Whilst her education did take a hit, she was determined to catch up, and almost made it to Medical School. However she was refused this opportunity due to her failing hearing, as a result of OI.
She then married and over the years gave birth to four of us! My two older brothers, and then my twin sister and me. Yes that’s right, my mum hit the jackpot – 2 for 1!
If you’ve ever met my mum, you’ll know her short stature is no reflection of her purposeful personality. She’s the strongest (and most stubborn!) woman I know, and I think only now as an adult myself, can I appreciate the journey she’s had through life, and motherhood. Us kids have all ‘flown the nest’, and she is now living her dream, studying a degree in History and Politics. She reads books like water flows out the tap!
Something I’ve found great pleasure in now is sitting at the kitchen table with my mum, drinking tea, exchanging stories of our life experiences. See how they differ. How times have changed. It couldn’t have been easy carrying OI twins, having OI herself, only knowing the hurdles she had to jump through to navigate a life that perhaps wasn’t built with disabled people in mind.
But nevertheless, my mum has taught me that when you can’t find the way, you can make one!
Hi, I’m Richard. I have OI type III. I was born on the 02 December 1993 and live in a seaside town called Troon which is on the west coast of Scotland.
Doctors told my mum and dad just the night before I was born that I was diagnosed with Osteogenesis Imperfecta. I was born with several broken limbs and fractured ribs. The doctors told my parents that I wouldn’t last a day because my condition was that severe, however, they were wrong; I’m still here and I will be for a long time.
Unfortunately for me I have never been able to learn how to walk because my legs are too weak and I also have a curved spine (Scoliosis). Since the age of three, I have been driving an electric wheelchair which is probably like walking except using wheels to get around places and doing everyday tasks.
I have broken and fractured that many times over the years I’ve lost count, it shows you how delicate I am.
Having this condition I have been very fortunate over the years by not getting much surgery on my bones or anywhere else in the body. The last surgery that I had was getting metal caps put in my mouth to replace the top and bottom back teeth.
Being in a wheelchair isn’t that difficult really. It doesn’t stop me from doing much, it gives me a lot of independence and opportunities such as going out to see the world by visiting different countries, going out with friends and family, cooking the dinner, dancing on the dance floor, playing the ukulele and playing power wheelchair football which I am enjoying at the moment.
Out of the whole family, I am the only one the that has OI, and I feel honoured to be the first one in the family to have the condition. My parents brought me up the same way as my two older brothers Greg and Neil. They didn’t wrap me up in cotton wool all the time because I have brittle bones and using a wheelchair they were and still are encouraging parents who are always willing to let me try different things.
The Brittle Bone Society has been supporting us since I was born. They have helped to raise funds for great quality wheelchairs and giving us medical support. If it wasn’t for the Society my life would be completely different.