Real life

‘I raised Dh220,000 to give my boy a new face.’

Friday - - Friday Contents -

Stand­ing at the side of the road, hold­ing on to his fa­ther’s hand, the lit­tle boy couldn’t stop gig­gling. With a mix­ture of ex­cite­ment and fear, he pulled his dad closer to the bat­tle tank I was driv­ing. We’d stopped right out­side the lit­tle boy’s house in Lak­tasi, a town in Bos­nia, and now he wanted to touch one of the three ma­chines in our con­vey. Once he’d placed his fin­gers on the side of the tank, he came run­ning up to me. He gave me a hug and then pointed at a foot­ball. I re­alised he wanted me to play, and so joined him for a kick about in his back gar­den. Ste­fan Mi­los was four years old and grin­ning so much that for a mo­ment I just saw the joy in his ex­pres­sion and not the fact that his face was mal­formed – his eyes were far apart, his nose was al­most nonex­is­tent and his nos­trils flared.

I’d met Ste­fan’s dad, Mi­los, two months ear­lier through the Min­istry of De­fence where I was an army staff sergeant on a peace­keep­ing mis­sion in Bos­nia. We’d be­come good friends and one day Mi­los had in­vited me to his house to meet his son and the fam­ily.

Ste­fan had been born with a fa­cial cleft – a rare con­gen­i­tal anom­aly. Lack­ing the right med­i­cal at­ten­tion in his home coun­try of Bos­nia, the con­gen­i­tal con­di­tion had been left un­treated and now the teeth on his up­per jaw were mis­aligned, his nos­trils were blocked, which forced him to breathe though his mouth, and his eyes were set so far apart that it was dif­fi­cult for him to see what was in front of him.

Want­ing to give the kid a nice sur­prise, I’d de­cided to take my troop with me and we had ar­rived in the small tanks – which im­me­di­ately fas­ci­nated Ste­fan.

The boy didn’t speak any English, but I spoke a lit­tle Bos­nian as I’d been there for more than two years, off and on. We didn’t need a lan­guage in com­mon and re­al­is­ing what he’d been through so far in his short life, I couldn’t imag­ine any­thing so heart­break­ing hap­pen­ing to my chil­dren.

But Ste­fan had no idea he was dif­fer­ent, and that was bril­liant. He was so in­no­cent and lov­able. Al­though we’d just met, he quickly climbed up into the tank with me and was cu­ri­ous about ev­ery­thing in it.

Al­though he was happy, I could see what lay ahead for the boy – health prob­lems be­cause of his eyes and nose, bul­ly­ing be­cause of his looks... Why should such a kind, fun-lov­ing boy have to go through so much? It just didn’t seem fair. Right then I de­cided I’d do all that I could to help him. I didn’t

Ste­fan had no idea he was dif­fer­ent – that was bril­liant. He was so in­no­cent and lov­able

– some­how we could un­der­stand each other. I was a fa­ther, so maybe that’s why. I had two sons back home, Harry, was six, and Toby, five, from a past re­la­tion­ship. Look­ing at lit­tle Ste­fan want the lit­tle boy ever to lose his spark. So as soon as I got back to base I talked to a doc­tor I knew in the UK who said he would need to see a CT scan of Ste­fan’s face be­fore com­mit­ting to surgery. I then sug­gested that Mi­los, 34, take him for a scan lo­cally and ex­plained how I was try­ing to ar­range surgery in the UK.

The scan found that the boy’s air­ways were blocked by the de­for­ma­tion and he could only breathe through his mouth. There were also holes in his skull near the eyes – a rare re­sult of the fa­cial cleft.

The doc­tors in Bos­nia who car­ried out the scan said that over the years the cleft would worsen, con­strict­ing

his air­ways and in­creas­ing his risk of chok­ing. Ste­fan’s mother Slavenka couldn’t hold back the tears when she heard the prog­no­sis.

Of course, Slavenka, 26, wanted to help her son, but she didn’t know who to ap­proach or what to do. Bos­nia was still fac­ing un­cer­tain times due to a war and had very few hos­pi­tals that could of­fer the spe­cialised care and treat­ment that Ste­fan re­quired. “We want to do all that we can to help Ste­fan, but don’t know who to turn to for help,” Mi­los told me.

Slavenka, a home­maker, and Ste­fan’s seven-year-sis­ter Nada pam­pered and pro­tected him so much – run­ning to help him up when he tripped and fell be­cause he couldn’t see straight, and hug­ging and kiss­ing him of­ten.

I had to help. It wasn’t just about want­ing to help the boy. I wanted to do some­thing for the fam­ily, who were so hon­est, hum­ble, gen­uine and lov­ing. Al­though they didn’t have a lot of money they were more gen­er­ous than a lot of wealthy people I’d met.

My doc­tor friend in the UK looked at Ste­fan’s scan re­ports and said his con­di­tion could be im­proved through surgery. That was a big step for­ward. I then started mak­ing some en­quiries and found that surgery – which would help aes­thet­i­cally as well as clear his air­ways – could be done in Paris, but the cost was huge – around Dh190,000, some­thing we couldn’t af­ford.

Googling, I found the name of a sur­geon who worked at Great Or­mond Street Hospi­tal, Dr David Du­n­away. I emailed him to ask if he would con­sider help­ing Ste­fan. To my amaze­ment, he said he would help, and he would of­fer his time for free.

I just had to get Ste­fan there. It was go­ing to cost £15,000 (Dh93,000) in

Men who had been at war for years put on a united front for Ste­fan - it was an in­cred­i­ble achieve­ment

flights, ac­com­mo­da­tion and to cover es­sen­tial hospi­tal costs. So I vowed to raise the money some­how.

I or­gan­ised a char­ity game of foot­ball be­tween Mus­lims, Serbs and Croats in Bos­nia, rais­ing €6,000 (around Dh30,000). They’d been at war for years, but put on a united front for Ste­fan. It was an in­cred­i­ble feel­ing and there was a sense of achieve­ment af­ter the char­ity match was over.

I’d seen the war, the trauma it can in­flict on the lo­cal people, and now to see at least part of the war­ring fac­tions join hands for this lit­tle boy was truly in­cred­i­ble. The knock-on ef­fect was that they had an arms amnesty and the groups handed over 156 ri­fles, 10,000 rounds of am­mu­ni­tion, and dozens of hand grenades that people had stored in their houses and now felt were no longer needed.

I also or­gan­ised var­i­ous char­ity events in­clud­ing a 10-mile pull of a Lan­drover, char­ity babr­be­cues and raised around £14,000.

Over the next five months we raised thou­sands more by way of gar­den par­ties and cof­fee morn­ings.

I came home to Dorset, Eng­land, in June 2003 and asked my lo­cal paper to help my ap­peal. Do­na­tions poured in – I was amazed by the gen­eros­ity of read­ers and their kind mes­sages. It was ob­vi­ous that I wasn’t the only one touched by Ste­fan’s story and char­ac­ter.

He needed a se­ries of three pro­ce­dures – one to re­move and re­place his teeth to re­align his up­per jaw, an­other to re­con­struct his nose and a third to re­con­struct his skull to bring his eyes closer.

In Au­gust, Ste­fan’s mum and aunt, Dze­jna, came with him to Lon­don for the ini­tial oper­a­tion and his dad and sis­ter, Nada, came for the ma­jor surgery.

A few days be­fore the oper­a­tion his fam­ily to Dorset and met my sons, Harry and Toby. Straight away the boys

got on, go­ing out­side to play foot­ball to­gether. Dur­ing the visit – Mi­los and I – pre­pared him for the oper­a­tion, telling him that he would be able to see and breathe much bet­ter af­ter surgery. But Ste­fan was not wor­ried or even ap­pre­hen­sive. He was his usual happy self, laugh­ing and play­ing.

I was by Ste­fan’s side through the oper­a­tion. What I found amaz­ing was that Ste­fan never showed any nerves, though I was in pieces.

In a 12-hour-long oper­a­tion, part of Ste­fan’s face was cut in half, his eyes moved closer to­gether and a nose con­structed out of car­ti­lage taken from one of his ribs. I was ex­tremely wor­ried and was hop­ing and pray­ing it would go off well. Night­mares that he might lose his eye­sight or that the doc­tors might cut his brain by mis­take left me ex­tremely stressed out.

He had to keep his eyes and face ban­daged for four days, and he didn’t com­plain once. When his ban­dages were re­moved, we all gasped.

His eyes were closer and he had a proper nose. Overwhelmed by emo­tion, Slavenka was weep­ing but Ste­fan was brave as usual. “I’m fine. Now you just re­lax,” he told his mother.

He had to re­main in hospi­tal only for a week af­ter which the doc­tors said he could re­turn to his home in Lak­tasi in Bos­nia but would need to re­turn for fol­low-up check-ups ev­ery month for six months.

How­ever, the doc­tor warned us it wasn’t over. Ten years later Ste­fan would need fol­low-up surgery – as his fa­cial plates grew – to im­prove his ap­pear­ance and help his breath­ing.

“I prom­ise I’ll get Ste­fan back here in 10 years,’’ I told his fam­ily when it was time for them to leave.

Ste­fan re­turned to Bos­nia, and a year later I left the army in late 2004. In­spired by the med­i­cal care Ste­fan had re­ceived at Great Or­mond Street, I de­cided to be­come a para­medic.

I met Cara In­gram, 37, while train­ing and we mar­ried the same year. I told her all about Ste­fan, and even af­ter we had two daugh­ters – Freya, seven, and Lili, five – I talked about him all the time. “We want to meet the boy Daddy helped!’’ our daugh­ters used to say as they were grow­ing up.

I kept in touch with Ste­fan’s fam­ily – speak­ing to them on Skype and watch­ing Ste­fan grow into a teenager.

Ste­fan was shy but he’d play me songs on his ac­cor­dion or send me links to his Youtube videos. “I’m so proud of you,” I’d tell him and he’d smile.

As the years passed I started fundrais­ing for his next surgery, know­ing that this time Ste­fan’s trip to the UK would cost over £20,000. The sur­geon, Dr Du­n­away, of­fered his ser­vices for free again, but there were hospi­tal costs, as well as flights, ac­com­mo­da­tion and visas for the fam­ily mem­bers.

I felt so bad be­cause at the time I’d bro­ken my leg in sports and couldn’t do any phys­i­cal chal­lenges to raise money my­self. Cara as­sured me my role as co­or­di­na­tor was just as im­por­tant.

But I got to about £7,500 and then it seemed like we’d run out of ideas. I just couldn’t find any more con­tri­bu­tions.

I spent ev­ery spare hour on my com­puter, send­ing letters, mak­ing phone calls, and or­gan­is­ing events. I had a prom­ise to keep and I’d have done any­thing. I put a lit­tle ad in the news­pa­per say­ing I was plan­ning to sell my mo­tor­bike for the cause and a kind el­derly lady who saw it con­tacted me. “I don’t want you to sell you beloved bike,” she wrote. “I’ve been fol­low­ing what you have been do­ing from the start. Just tell me how much you need.” I wrote to her about the amount I was hop­ing to raise and she sent a huge sum – I’m not al­lowed to dis­close it – which helped im­mensely. “Just tell him that the kind granny sent it,” she said.

I was once again amazed by people’s gen­eros­ity. Re­gard­less of their own hard­ships – my lo­cal com­mu­nity had been hit by flood­ing in re­cent months – people still gave what­ever they could.

On April 30 this year, Ste­fan ar­rived in the UK. He needed some pre-surgery as­sess­ments, be­fore be­ing ad­mit­ted for surgery on May 3.

I was more ner­vous than he was; Ste­fan just wanted it done. He was re­laxed and as he lay on the op­er­at­ing ta­ble to be put un­der anaes­thetic, he smiled and said, “I’m go­ing to sleep now!” The oper­a­tion lasted about four hours and in­volved re­plac­ing some of

Ste­fan is al­ways telling ev­ery­one how I have changed his life but he has to­tally changed mine

the met­al­work that had been in­serted into Ste­fan’s face in his first oper­a­tion 10 years pre­vi­ously. It had shifted slightly as his skull had grown and changed over time.

The surgeons also cor­rected the shape of Ste­fan’s nose do­ing a car­ti­lage graft and nasal re­con­struc­tion

When Ste­fan woke up, he was groggy but re­lieved that it was over. “I’m feel­ing good. It helped that it was with Dr Du­n­away again be­cause I knew I was in safe hands,” he said, beam­ing with joy.

Once he’d been dis­charged four days later, he and his fam­ily came to meet Cara and my daugh­ters.

The girls were so ex­cited and af­ter play­ing on the Wii, we went to the beach for ice cream.

I wanted to build mem­o­ries with Ste­fan so his trip wouldn’t just be about the surgery. I bought him a mini he­li­copter, my com­pany, Asda, do­nated an iPad, and a neigh­bour gave him a ham­per full of good­ies.

“This oper­a­tion is the best thing that could have hap­pened to Ste­fan. We wanted him to have this surgery be­fore he starts this next stage of his life – sec­ondary school,” Slavenka said.

The next day, it was time for Ste­fan to re­turn home. At the air­port, we were both emo­tional. Our jour­ney had started 10 years ago – in that time, Ste­fan had be­come a young man. He cried as we hugged good­bye.

“Thank you. I love you,’’ he said. “I feel blessed to have met you and will be your friend for­ever.”

I smiled – he’s an­other son to me. He’s never once moaned or com­plained – not as a four-year-old, and not as a 14-year-old.

Never once have I heard him say any­thing neg­a­tive.

He may need fur­ther surgery on his nose and to cor­rect the roof of his mouth, one day and when that day comes, I’ll be here to sup­port him.

Ste­fan is a won­der­ful boy. He stud­ies hard and is am­bi­tious – it’s hum­bling to be in his pres­ence. He’s in year 12 at school now. His dream is to pur­sue a ca­reer in mu­sic and I’m sure he will make it.

Re­cently, Mi­los and Slaveka asked me if I’d be Ste­fan’s god­fa­ther. It might seem like a small ges­ture, but in the past 200 years of Ste­fan’s fam­ily his­tory, never has the role of a god­fa­ther been filled by any­one out­side the fam­ily. In Bos­nian cul­ture it is un­heard of. But both in­sisted. Of course, I said yes and will be fly­ing out later this year.

Ste­fan’s al­ways telling ev­ery­one how I changed his life – but he has changed mine. I’m glad I was able to pro­vide him with the same op­por­tu­ni­ties as ev­ery other child his age.

REAL LIFE

Sis­ter Nada and Mum Slavenka pro­tected and pam­pered Ste­fan

REAL LIFE

Ste­fan with Dr David Du­n­away, the man who changed his life

Ste­fan’s mum was by his side for both op­er­a­tions

Cara and my daugh­ters Freya and Lili were keen to meet Ste­fan

Ste­fan would love to pur­sue a ca­reer in mu­sic – I’m sure he’ll make it

Ste­fan is like a son to me and I’ll be proud to be his god­fa­ther

Our fam­i­lies have a spe­cial bond

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