Grappling with a rare medical condition

By JACKLYN SIRIAS

How many in PNG are familiar with a medical condition called haemophilia and what, if any, cure is available for it?
It is possibly a very rare medical case not so many people are aware of.
My family in Wewak, East Sepik became acquainted with the medical conditionthrough my third born brother Noel.
But to this date, my family still does not know about any cure for it or where to go to seek proper medical attention.
Noel was born a very healthy child to my parents (Michael and Elizabeth) on Dec 1, 1989 at the Boram General Hospital in Wewak.
Among the seven children, he is the brightest child, the wise thinker in the family, and someone with so much hope for life and dreams to achieve in future.
In his first two years he was a very healthy boy going through his toddler stages and into a cheery little boy.
There was no sign of a sickness or disease or any deformities in his body.
One afternoon in 1991, my parents took Noel and my two other elder siblings Michael Jnr, and Leonie swimming at the Meni Beach in Wewak just in front of the family home.
Whilst at the beachNoel and Michael played with each other in the sand and the wave breakers. In their little game, Michael accidently fell on one of Noel’s thighs.
This caused him pain, so Noel started crying. My parents never knew that Noel was carrying in his body a medical abnormality that would affect him later in life.They comforted Noel, thinking that the pain would go away and he would be fine.
To their surprise, the pain grew from bad to worse all through the evening into the night and through to the next day causing severe swelling on Noel’s thigh.
My parents did not know what to do so they brought him to the Boram hospital to seek medical assistance and he was admitted. The doctor later diagnosed that he had a sore-like thing in his thigh that wouldhave to be removed through an operation, otherwise it would affect his bones.
So my father signed the parents’ consent form and allowed the doctors to operate on Noel. Dad never knew that that very day would be Noel’s life-changing moment. He never knew thatthe very operation would reveal Noel’s hidden medical condition.
During the surgery, Noel lost so much blood as he was bleeding heavily from the operation wounds which the nurses and doctors could not stop.
They could not even find the sore that they said was in his thigh. They feared that Noel would die as he was bleeding nonstop so they alerted my parents to look for people with blood group ‘O’ to help Noel otherwise, he could die from loss of blood.
After that one surgery, everything changed in Noel’s life. Just one little cut on his skin, and he would bleed to the last drop of blood, or a little bump on his shoulder, and it would cause half of his body to swell.
We were advised by doctors to look after Noel with all necessary care that wecould give. We were told not to play with him and hit him hard on any part of his body because the effects normally resulted in very painful swells on his body.
The pains and swells would last for weeks and months and even years.The family never knew the actual cause of it all.
It took the doctors very long to try and identify the actual cause of Noel’s medical condition.
No medicine that was prescribed could treat his condition; even painkillers did not help it but he takes them anyway on a regular basis just to keep the pain away temporarily.
On occasions mum treated the swells using traditional medicine until 10 years later when he was sent to Port Moresby General Hospital when doctors found out that he was suffering from haemophilia.
But because he was a growing child he always tried to be as normal as the rest of ushis siblings. So he would play and do everything a child could do only to end up being bed-ridden for weeks and months.
He would cry into the night, and my parents and including us the siblings would take turns to sit at his bedside and try to comfort and help him stop the pain but they do not go away.The pain seemed like part of his growing up.
However, despite all, Noel always looks at life from a very positive perspective. He attended school while enduring all this pain from primary school all the way through to tertiary level until he graduated in 2013 with a Diploma in Communication Technology at the Don Bosco Technological Institution in Port Moresby. He was the only student that was called up in his wheelchair that year to receive his paper.
He still has so many dreams to run after. He still wants to pursue further studies and become an independent individual.
However, his medical conditionhas wasted his joints and limbs, his mobility is hindered and that has made it difficult for him to move around by himself.
He is usually helped with a crutch or a wheelchair and requires someone to be by his side to assist. He is currently at home with the parents in Wewak.
If you had known Noel in person, he is a very strong person, with an ambitious mind, who always liked to be independent to do things by himself.
Despite his condition, he tells his family, “If God does not want me to be here, he would not have let me be but he has a purpose for my life that is why I am here.”
Noel’s case is just one of many others the country’s health system is sadly unable to correct or provide guidance or assistance for.
If only there was better help, the 28-year-old would have lived a normal life or be able to cope with his condition a lot better. The least that could be done for Noel is a mobility device to enable him to move about and make life easier for himself.
“I have completed my tertiary education and I am trying to live a normal life but with this disability I could not find a job, or further my education and live a normal life as I am struggling in terms of mobility. This causes me to become very dependent on other people who also have their lives to live,” he says.
“However, I have read, heard and watched on TV that technology has advanced in so many ways that mobility devices such as electrical wheel chairs are now available to help people like me so we no longer rely on people to push us around.
“Therefore, I am doing some fundraising of my own but I’m also trying to seek assistance in purchasing an electric wheelchair.
“Having an electric wheelchair would really help me in terms of mobility and it would also mean a world to me as I can move around on my own and take care of myself.”
Noel knew that we the family will not be around all the time to lend him a hand when he needs it.
There will come a time when he will be on his own and help himself.