Anthony's story

Anthony Aboumelhem

Sydney, Australia

19 years old

Suffers from Down’s Syndrome

Survived Testicular Cancer

I always loved the saying “you only see the tip of the iceberg”, because it’s the only way I could ever describe my son. Everyone immediately recognises his condition as soon as they lay eye on him, but below the surface there is so much more, I could write an entire book about him.

In a few months, he will celebrate his 20th birthday, but to those who meet him for the first time, he comes across as a happy child who could easily pass as 10 years younger. A few years ago he started growing a slight moustache, he added a bit of height and weight, but that’s as far as he claimed out of his teenage years, and yet, at his young age, he’s already gone through more than what many people will in their lifetime.

The first sign of trouble came during a routine ultrasound. Even though the measurements added up, the doctor asked me “hypothetically” should the baby be born with Down’s Syndrome, would I would still want to keep him. “Without a shred of doubt,” I rorted back. I was horrified, not at the possibility of him being born disabled, but at the doctor even entertaining such a thought. He explained that this was common procedure as many parents opt for an abortion, but I couldn’t think of anything more absurd.

When I woke up from the anaesthesia on the day, all I saw around me were grim faces. As I drifted in and out of consciousness, I heard the nurses fighting with the doctor. Anthony was born post-mature, he was weak, his skin was soft and he had Down’s Syndrome. I was helpless, but thankfully, another doctor intervened and insisted to give him a chance; he was put on life support.

From his early days, no trip to the doctor ever went smoothly. For every piece of good news, we were given ten bad ones in return. He was a fast-learner, but his development was slow. But what I saw was different to what they did. As we waited in the clinic, he would often solve a puzzle faster than most children normally would, and the doctor looked at him quizzically, always assuming that I did it for him.

Just as we started to adapt to life with Anthony’s condition, he began to show unusual symptoms that did not come up in any of the books I read. As I showered him once, I noticed that his testicles were abnormally-shaped. Days later, he was diagnosed with Testicular Cancer.

When you’re faced with this sort of news, every discussion with the doctor becomes nerve-wracking. I try to sit calmly as he explains to me the situation, but my mind is racing, constantly dreading the next sentence. It feels like a clock ticking loudly and you can do nothing to stop it. The physician never uttered the words “he’s got this long to live”, but in the back of my mind, that clock ticking grew ever louder.

During his treatment, one Christmas Eve, he vomited out cherry seeds that he consumed months ago, we rushed him to hospital. His intestines were tied up hence he wasn’t able to process any of the solids he ate. We had no time to feel sorry for ourselves; we basically moved in to hospital. He underwent two operations, at only six years old.

The chemotherapy lasted for a few years, but its damages were permanent; he lost hearing partially and in turn he cannot pronounce many sounds, hence to most people he is unintelligible. Cancer treatment in Lebanon was advanced, but the attitude to Down’s Syndrome were dismissive at best. In hospital waiting rooms, some parents would look at us with pity and offer a faint smile, while thinking that we were inconveniently taking the place of their children who are more worthy of the doctors’ attention. The Ministry of Health were graceful enough to send us medications, except they’d be expired and in adult dosages. We spent all our money on his treatment, my older children sacrificed a lot for him. We fought hard. We were alone. But at age 10, he was declared Cancer-free. I cried a lot, but for once, they were tears of joy.

We arrived to Australia in 2004, I was happy to leave everything I knew behind in a bid to give the children a fresh start.

We were encouraged when we saw how much this country embraced the disabled: the TV commercials, the government funding, the inclusive speeches, the ramps on every street corner…. But the reality on the ground was not so bright.

Anthony started going to school and mixed with other children, but it didn’t last long. The teachers were not qualified enough to deal with him.  

He goes now to daycare, but in 10 years he did not learn to even spell his name. We send endless notes asking them not to feed him unhealthy food, but he comes home every day bloated from the sausages and fries he consumed. He supposedly goes to gym and dance classes, but the only activity he really does is when we walk the dog every day. Despite everything we do to keep him healthy, he puts on weight easily which triggered his fatty liver (non-alcoholic steatohepatitis/NASH). His muscle are weak and his eyesight and hearing are deteriorating. Sometimes it feels like every part of his body is working against him. No wonder people with Down’s Syndrome do not have high life expectancy.

And if this is not enough, imagine also being let down by the health system. Not long ago, he went to remove his tonsils, and there at hospital he caught a virus, which infected his mouth and ate the bones holding his teeth in place, and now they’re always wobbling.

While the government helps to a certain degree, the out-of-pocket expenses are still excessive. When he turned 18, I took him to the welfare office where they asked him to sign paperwork. “But sir,” I said “he clearly cannot sign.” The case officer just shrugged his shoulders at me and insisted.

Despite the hardships, I never see Anthony complaining. The joy he brings to me, his father and his brothers outweighs all the rest. Just like at the doctor’s clinic when he was a baby, he continues to surprise us every day by doing things that the world doesn’t see.

He has an elephant’s memory; he remembers on his own to take his medications, and even reminds us of ours. He knows when people don’t understand him, and will always try to find a way to explain what he’s saying. He doesn’t read or write, but if he sees on TV a new video game he likes, he will memorise how it’s written and go type it on the computer, and when we buy it for him, he will finish all the missions like he was an expert. He is very aware of his surroundings and can notice any change from miles away. We trust him with navigation and technology. He truly has a sixth sense, possibly even a seventh.

“He doesn’t read or write, but if he sees on TV a new video game and he likes it, he will memorise how it’s written and go type it on the computer, and when we buy it for him, he will finish all the missions like he was an expert… He truly has a sixth sense, possibly even a seventh.”

Sometimes I wonder what he will do in the future without me, but the truth is what would I do without him? It could be because I am emotional, but I feel like I need him more than he needs me. When I want to give up, I get my strength from him. Through his stubbornness, I learn to be patient, and through his stammering, I learn to listen. I wish I could live in the moment like he does, without worrying about tomorrow.

It pains me that he went through so much, but he’s a lot stronger than I am. He is caring and intelligent. He has his past and his future. Like everyone else, he has a mission. He has so much to give to the world. Now if only people could learn a bit from him. I wish they could see more of what we see.

I don’t expect of the medical community to “cure his illness”, but I pray the world becomes more accessible for him, and that his condition becomes better understood, instead of being considered a write-off. I just want him to be afforded the high-quality of life he deserves. In a few months when he comes to blow out his 20th candle, as always my mind will inevitably think back of that doctor who wanted to let him out to die; how could he even dare of depriving me of such a gift?

By Michel Wahba