Hunter syndrome gives a new meaning to Mother's Day
Mother's Day is one day of the year that is celebrated around the world. It's a day where mothers are honored by their children. But what if you are a mother of a child with Hunter Syndrome? What if your child doesn't even understand there is a celebration, let alone the meaning of that celebration. What if he is you're first born? And he is nearly eight years old but yet he has never even said the word mum. That's because he can barely speak. Well that's the story of many mothers around the world and that is my story. I am a mother of a child with Hunter Syndrome. My beautiful boy was diagnosed with this devastating and degenerative condition for which there is no cure. His system is missing an important enzyme and the lack of this enzyme means bad protein is stored in his body which slowly destroys him physically and mentally. Hunter syndrome is robbing him of his ability to be a normal and healthy boy.
My life changed forever on the day doctors uttered the words that he has Hunter Syndrome. It felt like all the dreams and aspirations we had for him disappeared at that same moment. What would you do if you were told that your child is basically going to die and probably in his early teenage years. I did the only thing I could do at the time. I cried and grieved for days. I got mad, sad and I questioned God. The pain was real and at times even unbearable. I really hoped it was a bad dream and that I would wake up from it. But it wasn't.
Ultimately, I realized that hunter syndrome was now my new reality. So I had to come to terms with it and I had to find a way out of that dark place. I had to learn to see the positives in the situation.[md1] I needed renewed faith and lots of hope. I had to develop a lioness spirit. One where I would fight for my child no matter what and beat Hunter Syndrome. Even though it is still hard to see how I can beat this horrible disease. His condition isn't just hunter syndrome, it involves many other issues similar to Autism, ADDHA, oppositional behavior and compulsive disorder. You ask yourself how I am going to cope. Especially when you can see the effects of the condition every day. It is tangible and it is in your face.
His facial features are different, quite different to the baby I gave birth to. His fingers are slightly clawed and his behavior, well let's just say it is a challenge. I can't hid from the reality that exists. I just have to keep going and hope one day we will beat this horrible disease. I keep telling myself I need to fight for my child. The truth is I am also fighting for my own sanity.
You see when you have a child with a life threatening condition everything revolves around them. I can't tell you how many hundreds of hours we spend on writing letters, strategically planning and anticipating the next hurdles that relate to treatment and how we are going to overcome them. There is of course the many doctors' appointments, hospital visits and various specialists my child has to see. My child's specialists include an Audiologists, Speech pathologists, Anesthesiologists, Cardiologists, Developmental pediatricians, Rheumatologists, just to name a few.
Friends and family often at times say I don't understand what you are going through but with the exponential rate of modern medicine, surely they will find a cure. They are right, they don't understand and yes medical technology has come a long way and there is lot more research going on but unfortunately finding a cure for hunter syndrome is not that close.
My son's disease is rare, ultra-rare and the only people driven to find a cure is the patients and their parents. The doctors are trying too and they want to help their patients but they have very little funding to do research.
But as a mum I have do everything I possibly can. I have to find the strength and the determination to keep going. Just like an elite athlete, I wake up every morning not really feeling like training but knowing if I don't I will not win the race. Coming second is not an option. I have won major battles against hunter syndrome in regards to changing government policies around treatment for hunter syndrome. I have managed to achieve what seemed impossible including treatment, therapy, spreading awareness and so on...... But the thought of losing your child is never far from your mind so you are motivated by both fear and hope. You research everything and in my case pioneered a lifesaving treatment available in the hope that he will get better not worse. This disease is cruel and there are days when I am just grateful that my child is still alive.
I work hard and I hope for a better future for my son.
But sometimes I still wonder. Will I ever beat hunter syndrome?
The answer is, I really don't know, but I still hope to.
And I hope one day my son will understand the meaning of Mother's Day.