When should a parent stop fighting for their special need child?

09/12/2014 13:54

When should a parent stop fighting for their special need child?


Hunter syndrome is ultra-rare genetic condition affecting 0.6 in 100,000 births in the world. Hunter syndrome occurs when an important enzyme the body and the brain needs is either missing or is not working properly. There is no cure for hunter syndrome and most sufferers will only live to see their 14th birthday. There is approximately 22 sufferers in Australia with this condition. Fifteen of those sufferers currently receives a lifesaving drug under the federal governments Life Saving Drug Programme called Elaprase.

It is an artificial enzyme that is proven to treat only the physical effects of hunter syndrome. Physical symptoms include but not limited to joint stiffness, facial deformity, airways obstruction, enlarged liver and spleen, heart valve failure, irritable bowel syndrome and hearing impairments, Patients with the more severe form of the condition can experience autism like symptoms such as hyperactivity, obsessive compulsive disorder, learning impairment, language difficulties and short attention span.

Growing up with Hunter Syndrome

I grew up with three sick siblings.  We knew they were sick-very sick. But we had no idea what was wrong. As a child I wanted to help. I would tell myself there must be something I can do. So I would prayed every night for a miracle. I thought

if I was good God would hear my prayers. I also wanted to be doctor that way I could help-help their suffering.

My eldest brother Darren suffered from frequent episodes of epilepsy as well as cough and cold. Imagine your child getting a cough and cold, all children get them-right! (not a big deal) a dose of cough medicine, plenty of rest and some lovely soup and they are generally good within a week if not days. Well not so with my brothers. Coughs and running noses lasted for months. Then came the inevitable chest infections and phenomena which would follow shortly after.

 

His health continued to decline and within the space of a year my brother Darren went from being able to walk to becoming paralyzed.

 Hunter Syndrome is deadly

He was frequently in hospital with influenza. My parents would do the daily visits but one Monday morning they asked me to visit the hospital as they had to work . I was on my way to school but I wanted to visit him, I hadn’t seen him for a week and he would be happy to see me..

 

I got there and his bed was empty, My heart sunk but I thought be positive, they just took him for an x-ray. he will be back. I waited and ten minutes later a nurse walked in. I said, ‘where is Darren’, she replied, ‘where is your parents’? I recalled saying, ‘they are at work’. ‘Where is Darren?’ I politely asked again as the tears began to flow down my face.  She quietly said, ‘sorry kid, he’s dead’. I screamed as I recall saying to her. ‘Where is he, you are lying’. As I walked away from the hospital in disbelief I struggled to understand. I asked God, ‘why, what did my family do wrong’?.

I had to walk approximately 2 miles back home. I contemplated whether I should continue to school or go home to break the sad news. I decided to go home. I saw several of my community members on the way home but I did not stop, I did not talk and I tried my best to hide my tears. I didn't want anyone to ask.

I was afraid, afraid I would be called names or even worse being beaten up before I got home. So I tried to be strong. I smiled and as strangers asked why was I heading back home and not going to school. I found my father and told him the devastating news. I witnessed him cry for the first time in my life. He immediately went to the hospital to demand that they show him his son.

We buried my brother at the tender age of 14 and death was something I had to learn to accept. My brother Darren wasn’t the first sibling to die so my brother Dwight’s fate was sealed. As the years went by I watched hopelessly as Dwight deteriorated physically and mentally .The truth is there was nothing I could do, certainly not in my native Jamaica. There was no treatment available and even if there were we couldn’t afford it.

The gene I did not need

In 2008 Dwight finally succumb to his illness and died at the age of twenty six. However, Dwight’s brave fight to stay alive for so long would bring us answers to this horrible condition. He lived long enough so his blood and urine samples could be sent from Jamaica to Westmed Children’s Hospital to be tested.  Unfortunately as faith would have it I learnt I carried the faulty gene and 50 percentage chance that a male baby I had could be affected.

In 2007 I had a beautiful baby boy. I named him Christian. He looked happy, healthy and loved him to pieces. But there was a dark cloud looming, was he affected by hunter syndrome? This was the nagging question. Two weeks later I found out he we was and I was devastated

Fighting for a clinical trial

Fast forward five years later and I have continued to fight to save my son s life. Even though there is a known and proven drug to stabilize Christian’s physical condition. We have spent the last three years fighting to change a government guideline that precludes patients from receiving life saving treatment. I understand my son disease is rare and therefore neither government nor pharmaceutical are searching for a cure.  I understand that his treatment is expensive. But putting things into perspective the number of children with my son disease is small. Is it truly going to break the Federal budget? No it's not. On the other hand should government remove discriminatory guideline and redtape to allow private sector investing into medical research commonsense tells us it will be good for the economy and for tax payers.

So if our children cannot get treatment, what should they do? Should we stop fighting and just hope for a miracle? Where will that miracle comes from, if not their parents. We cannot just let our kids die. I certainly will not sit back and lose my son to hunter syndrome. I have lost to much already.

Our children are brave.Christian has no choice. In order to get better he must put his tiny body through a science experimentChristian has no choice. In order to get better he must put his tiny body through a science experimentChristian has no choice. In order to get better he must put his tiny body through a science experimentChristian has no choice. In order to get better he must put his tiny body through a science experimentChristian has no choice. In order to get better he must put his tiny body through a science experimentChristian has no choice. In order to get better he must put his tiny body through a science experimentChristian has no choice. In order to get better he must put his tiny body through a science experiment Christian has no choice. In order to get well he must put his tiny body through a ic

Scientific Scientific scientific experimentation. As parents we want to work with all steakholders. Together we can bring hope.

It’s time for government and bio Pharmaceutical to be brace. 

The hope for our kids are clinical trials. The hope is a cure. They need clinical trials. Shire's clinical trial must happen