‘I’ve smashed more than 80 bones but I don’twant a broken heart’
Briton Lorna Maddison has broken almost every bone in her body. She thought she’d never meet a man who would understand her rare condition but then shemet Ross...
Dragging a comb through my hair, I froze. Looking in the mirror, I could see that my eyes were a deep shade of blue – a warning that a ‘fragile moment’ was coming. It might sound ridiculous, but my blue eyes darkened whenever I was at risk; it was my body’s way of telling me that I had a broken bone or that something was about to break. “Nobody move!’’ I said, warning everyone not to come close to me.
I wasn’t being overly dramatic, it’s just that I’ve learnt the importance of being cautious growing up because of my condition, called osteogenesis imperfecta, also known as brittle bone disease.
My mum, Kerry, told me that I’d cried so much in the first few months of my life that she’d realised something was wrong.
“Babies cry,’’ doctors had said, waving her away. But Mum eventually got her way and I was X-rayed. It turned out I had broken bones in my arms and wrists. As it’s so rare – babies’ bones are softer than adults and harder to break – my entire family was questioned but, of course, no one was hurting me at home, so doctors ran tests.
They realised I had ‘blue sclerae’, where the whites of myy eyes were blue, a characteristic of osteogenesis imperfecta. My eyes are always tinged with blue,e, but it becomes a more intense shade when I have a break or amm particularly fragile.
There is no cure for my condition and treatment is aimed at boosting overall bone strength to prevent fractures and to maintain mobility. Doctors warned Mum I’d be disabled andd have a short life. It was a death sentence, they said. It was hereditary, a faulty gene on my dad’s side. But it was no one’s fault.
Despite the diagnosis, the first few years of my life were OK. I learned to walk and although I lost my balance easily and my feet turned inwards, I wasn’t so different from other youngsters.
When I was five, I was gardening with my grandparents when I saw my best friend, Rachel, arrive home. She
Doctors warned Mum I’d be disabled and have a short life. It was a death sentence, they told her
lived next door and, excited, I ran towards her. In my haste I tripped and fell, breaking both femur bones. It was my first big break and it hurt.
Crying, I was rushed to hospital and had both legs in casts for eight weeks, so I had to use a wheelchair to get around. No sooner was I back on my feet, than I broke my legs again.
I didn’t want to spend my life in a wheelchair. I wanted to walk. But
It wasn’t just my legs. I only had to lean on my elbow and it would snap. I broke my wrists too
every time I did walk, I broke my legs again.
“Lorna, you may need to give up walking,’’ doctors advised. “It’s easier and safer for you to use a chair.’’
I resisted at first. I had physiotherapy and used a walking frame, but I became so weak and so prone to falling over, I resigned myself to life in a chair.
It wasn’t just my legs. I had only to lean on my elbow and it would snap. I broke my wrists and fingers too. The longer I was in a wheelchair, the weaker I became and the more bones I broke. Granddad started keeping a tally and lost count when we got to 80. When I was seven I went to Great Ormond Street Hospital in London, where I had titanium inserted in my legs, which helped to make the breaks less severe. Instead of snapping my bones in half, they just broke against the titanium rods.
I also started a drug trial of Risedronate when I was nine, which helped to strengthen my bones, making them thicker and less prone to breaking. The titanium rods and the drugs had made me feel much stronger and, aged 11, I was ready to get out of the wheelchair.
Mum stood across the room from me at my grandparents’ house. “I’m going to walk from here, to you,’’ I said, as I stood up. I was nervous at first, wondering if I’d fall or break anything but with each step I became more confident. As I reached Mum, we both cried with happiness. It felt good to be on my feet.
A few months later, I was getting ready for school when I fell and broke both legs.
“Here we go again,’’ I thought, knowing I had just written off the next six months of my life.
I felt like my life was a cycle of broken bones and hospital visits. There was so much I couldn’t do – sports, dancing – and as I got older, I felt more excluded.
My friends would meet up, get the bus into town, go shopping. But I couldn’t keep up and I felt more and more self-conscious. Rachel did her best to include me. She’d take me to the shops in my wheelchair, helping me get over kerbs and opening doors for me. But when she went on a school ski trip when we were 14, there was no way I could go with her.
“How was it?’’ I asked her when she got back.
Rachel told me all about how she’d clumsily fallen over on the slopes and a boy from school, Ross Sherriff, had come to her rescue. I just nodded and didn’t think any more of it, but later that day, Ross came to see Rachel with his dog. I went over to say hello to his pet and ended up chatting to him and Rachel.
Ross and I hit it off straight away; he was funny and kind, a lovely guy, just like she’d said. But I was sure he
Naturally Mum wanted to wrap me in cotton wool. But my boyfriend Ross wanted to see me fly
was just being friendly. He wouldn’t ’ want to get involved with me, the girl in the wheelchair, so I forced myself to forget about him.
But Ross, 14, turned up at my house the next day with a bunch of flowers. I blushed and was flattered. The next day he turned up with another bouquet and the day after that, too. In fact, he turned up every day for three weeks. By then I realised he did like me.
“Come on a date?” he begged. We went for a coffee and talked and talked. His friends told him not to get involved but Ross didn’t listen. I told him from the start – life with me wouldn’t be easy as I break so easily. But he was so patient. And the first time Ross had ever seen me, I’d been in my wheelchair. He didn’t care.
At first, Ross was scared to hold my hand in case he broke me or hurt me. “It’s OK,” I told him, and he was so gentle, carrying me out of my wheelchair and touching my fingers. “You can do anything,” he’d tell me as we sat chatting and I voiced my fears. His belief in me gave me strength.
At 16, I had my right leg reconstructed. While I was recovering, Bonfire Night arrived. I loved fireworks and was devastated that I’d miss it because I couldn’t go outside. It was a chilly November and my severe arthritis – a side effect of breaking my bones so much – would have seen me freeze. But Ross had otherh ideas. Treating me as if I were made of china, he gently swooped me up in his arms and carried me out into the garden, where he’d laid down every blanket he could find. He’d lit hundreds of candles and had five jumpers for me. We snuggled under the blankets while fireworks lit the sky. With a boyfriend like that, I could hardly feel down about my condition.
I didn’t want to spend the next 10 years in a wheelchair and was determined to walk without breaking something. Ross believed in me, I owed it to him to believe in myself too. Thanks to the strengthening surgery and trial drugs, I was strong enough to try. Ross was by my side every day. He’d hold my hand or encourage me to take one extra step per day. I increased my physiotherapy and tried to do just one extra length in the pool whenever I felt like giving up. Slowly, my confidence grew.
Ross would link arms with me and encourage me to walk away from my wheelchair. One step further each time. Mum would watch anxiously but Ross was never nervous. Mum had seen me go through so much since I was a baby and naturally wanted to wrap me in cotton wool. But Ross wanted to see me fly.
Now, I can leave my wheelchair in the boot of my car while I’m at university all day. I know I haven’t suffered my last broken bone, but I am determined to spend as much of my life as possible standing up – and with Ross by my side to catch me, I know I am going to be OK.
I know when I’m weak because my eyes go that deep shade of blue, and then I take it easy.
I’m doing a degree in child psychology and I work as a children’s worker for Wearside Women In Need, a support group for victims of domestic violence.
Ross, now 20, and I are saving for a house together and he still brings me flowers and goes mad on Valentine’s Day with gifts and a card. There were times I thought I was too broken to find love. But Ross sees beyond the broken bones. My birth flower, the white narcissus, says, “You love this person just the way they are”. That’s how I feel about my family and Ross – they show me I can be loved, just the way I am, brittle bones and all.
Lorna, 20, lives in Sunderland, England
Even as a baby, I had broken bones
I didn’t let my condition stop me having fun
Ross and I met when we were 14; he showered me with flowers
I might be in and out of hospital, but I amdetermined to live a normal life
My grandad kept a tally of my broken bones: we gave up at 80
Ross believes in me, so I believe in myself
I lost my balance easily, but I wasn’t so different from other kids
It’s hard to feel down with a boyfriend like Ross
With Ross there to catch me, I know I will be OK