Doctors told my parents: God wants me for himself

Noel Aquilina has made it his mission in life to discredit the dismal prediction made by a doctor soon after he and his twin sister were born 35 years ago.

If you wake up in the morning with a positive thought, half your day is sorted

“I have spina bifida and my sister does not have a disability. My parents tell me that the doctor’s first reaction, when we were born, was to tell them: ‘Treasure the girl but forget about the boy since God wants him for himself’.

“But I never gave up and my parents always encouraged me,” he grins with satisfaction as he sits at a piano at St James Cavalier’s music room in Valletta where he displays his musical skills.

But Mr Aquilina is no sedentary musician. His lust for adventure is immediately evident as he starts talking about his passion for sports and the several marathons he has taken part in – included hand-cycling, paragliding and canoeing challenges.

The young man has a packed life: he works as an accounts’ clerk with a private company, he is attending an evening course in Youth and Community Studies at the University and he trains regularly on his hand-bike – his favourite sport.

Looking back he finds that he was lucky to have support from his family who always made him feel he could live a “normal childhood”.

“I went to school like other boys and I was an altar boy like my friends. When it came to playing with the other children I never held back. I was always one to join in,” he smiles. Now, he adds, he also finds immense support from his girlfriend, Victoria Gouder, who he has been with for over three years.

Despite the fact that he always had a leg-length discrepancy he never felt there was anything wrong with him.

“Believe it or not the first time I saw that I really walk differently was when I saw the video of my sister’s wedding – 11 years ago,” he says.

Mr Aquilina feels that sports and music have helped him a lot in terms of socialising and learning to speak up.

When he was in his early 20s he started dabbling with the piano at his parents’ house. He would hear a song on the radio and play it.

On one occasion a man, who happened to be a piano teacher, heard him play and approached his father to send him to lessons.

He started learning music but stopped lessons once he started working due to time constraints.

Today Mr Aquilina plays for leisure as he feels he can express himself through music.

When he got into a work routine he started craving some form of adventure and started asking around in search of sports opportunities. He was told about the gym at the Razzett Tal-Ħbiberija, now known as Inspire. The gym was not enough – he wanted a challenge.

He found out about the Ability Challenge, an overseas sports challenge, and participated for the first time in 2007 in Austria.

He again took part in the 2008 and 2009 editions in France and Italy where he had a go at paragliding, hand-cycling, canyoning, canoeing and caving, among other things.

The following year, he joined his hand-cycling coach Sergio Sciberras, and together they cycled 318 kilometres across Sicily in three days.

In October 2011, when he went for a leg check-up he learnt that he had a chronic bone infection and his left leg needed amputating.

Before the operation he went to therapy to prepare himself for what he was about to face.

He also found a lot of help from the support group Amputees for Amputees.

On October 19 that year his leg was amputated. The following day he was in the hospital’s rehabilitation gym.

“It was like a form of training and I found motivation there,” he says.

Now that he was an amputee he had to deal with the hospital’s prosthetics’ unit – often criticised for its bad state and awkward location.

“The first time I went there I thought: where the hell am I? The place looks like a dungeon and by just trying to get there you might break a leg.

“It is not a nice place for people who went through the difficult experience of losing a limb. But the staff there make up for it,” he says.

By December he was back at the office, walking with the help of crutches. He is now training for the Brazil 2016 Paralympics and participates in local cycling races with the support of his friend Claire Azzopardi Lane, who coordinates his cycling activities.

“Life is an adventure and you have to create opportunities for yourself in everything – be it social life or work. You have to search and prove yourself,” he says.

Positivity is also a key factor. “If you wake up in the morning with a positive thought, half your day is sorted,” he says.

Now Mr Aquilina gives motivational speeches in schools.

“Today I thank God for my disability as I learnt to use it as a tool to be a role model for others who went through something difficult,” he says adding that he is the vice president of Breaking Limits, a disability NGO with a difference: one with no time for saccharine portrayals of disability or incessant tugging at heartstrings.

He admits that he does get angry at times. But not at his condition – at society that often uses insensitive language.

“It hurts to hear people speak about ‘handicapped’ people. It’s not just a word,” he says. While he tolerates the use of the term ‘disability’ he does not really like it either.

“I don’t like the term disability because if you disable something you’re unable to use that person or object… and it’s not the case,” he says.

Understanding spina bifida

Spina bifida means ‘split spine’ and refers to a condition that primarily affects the spinal cord.

Between 1993 and 2012, 48 cases were registered in Malta, explained neurologist Stephen Attard, a resident specialist in paediatrics at Mater Dei Hospital.

Spina bifida happens when a baby’s spinal column does not close all of the way in the womb.

People can have problems with walking or going to the bathroom, gastrointestinal disorders and learning disabilities.

The higher the level of spinal defect, the more profound will be the degree of disability.

Dr Attard said 4mg a day of folic acid taken three months before conception reduces the incidence of spina bifida by 85 per cent.

Lack of expectation that independence is a realistic goal and over-protectiveness tend to impair adaptation to independent living, he adds.

“The long-term health of people with this problem depends on safeguarding kidney function.

“Half of our children with spina bifida need Clean Intermittent Catheterisation in order to drain urine from their bladder that would otherwise cause kidney damage from high pressure.

“Until children learn to perform CIC on their own, it needs to be done by dedicated parents and school nurses every four hours. Provision of appropriate facilities in public places where this procedure can be performed would greatly help families,” he says.

The Sunday Times of Malta is telling the stories of people with disabilities who are overcoming societal barriers. These monthly articles are not aimed at depicting these people as ‘super heroes’, but at helping society out there understand the needs and concerns of the 34,600 disabled people in Malta who are often hindered by lack of accessibility and understanding. Anyone who has a story to share can contact ccalleja@timesofmalta.com.