‘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...

Friday - - Dangerous Liaisons -

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

Newspapers in English

Newspapers from UAE

© PressReader. All rights reserved.