A father shares chis relentless efforts to build a future for his special child. Walter Lee wrote to CHALLENGES sharing his family’s commitment to make life better for little Zy.
I have been living in Thailand since 1989 and am the chief executive officer of Venturetec Marketing Company Limited (Thailand). My wife Nok and I have been blessed with three great kids, V, Mij and Zy. Of the three, it is little Zy, who will turn two soon and is the family’s ball of fun. My little “professor” as I fondly call him is special, literally, as Zy was born with one complete left arm, half a right arm, no right leg, a malformed left leg with three toes and has dislocated hip joints. He is otherwise just like any other baby.
Little Zy took our whole family and hospital (rated as one of the top in this part of the world) by surprise the day he was born, the morning of September 30, 2006. (Yes, we had gone through the ultra-sound on the 18th week of Nok’s pregnancy and this was not detected.)
The first three months after his birth was about holding the family together. V was three, Mij was one and Nok just could not believe how she could have carried little Zy for nine months, followed all the doctors’ advice and not know all of this was coming? She was crying most of the time while still taking care of the three children.
As for me, all I had wanted was for my family to be happy. I had no time to waste being sad or shocked anymore. I knew this was only the beginning and I have psyched myself up to embark on this journey of discovery, to a dimension that I would have otherwise very likely overlooked in this lifetime. Little Zy had come with a message for his old man. I needed to accomplish three things in the following order:
I needed to get Nok back because the chances of succeeding in whatever without her by my side would be slim.
I needed to make sure little Zy is cheerful and happy. Cheeriness breeds optimism and without optimism, the chances of succeeding with whatever treatments would be tough.
I needed to make sure little Zy is not deprived of ANYTHING that he would be entitled to experience if he was otherwise born with complete limbs.
Ball of fun
Little Zy is a ball of fun and surprises. He grabs at everything, crawls everywhere, rolls around like a ball, swims fearlessly like a driftwood, has a great appetite, does funny baby talks, arm-wrestles his elder brother, laughs and cries a lot and climbs up two flights of stairs ON HIS OWN!! I suppose my second objective had also been achieved.
After three months, Nok stopped crying everyday. She was strong and she knew the only way to treat and nurture little Zy was by treating ourselves first. We talked a lot about it and we brought our baby Zy out a lot, not so much because we had wanted to see the city but we needed to get used to the way the world would be looking at our family, be it awe, surprise, sympathy or a mixture. Going out together a lot and talking about it a lot was very therapeutic and I am happy to say we are a lot stronger and in the process and have grown even closer together. I think my first objective had been achieved.
Over the past year, we have been to numerous hospitals in Thailand, sought assistance from different groups and associations, e-consulted talked with paediatric and or orthorpeadic specialists from one continent to another, about little Zy’s case and his chances of standing and walking. And we were told time and again to be patient, to wait and see. We were told Zy would turn out ok because at least his brain is functioning. That was not good enough for me! I knew Zy will be able to get around fine in a wheelchair but that just was not enough for me! I want him to have an option to stand and walk if he so chooses to. This desire of mine had led me to make the following discovery…
Deep inside me, I have a nagging fear that what if I eventually stumble across a cure or treatment but am unable to provide for it for whatever reasons…
Thailand has more than two million disabled persons, many who do not even get integrated into the mainstream society, certainly not by choice, I think. Many of them shun the conventional because the mainstream shuns them, unfortunately sometimes unknowingly.
There is a pediatric orthopedic specialist, Professor Carsten at the University of
Heidelberg in Germany, whom I had been introduced to by a good samaritan couple/great friends. I had visited him last October. Prof Carsten and his team of prosthetic specialist tell me they are 80% confident they can make little Zy stand and walk. They showed me their work and gave me a prognosis of what, when and how they will be treating little Zy in the next few years (seven treatments in five years to be precise with each treatment lasting anywhere from four to six weeks) I was overwhelmed and hopeful again. That is exactly what I have been looking for the past 12 months.
I told Prof Carsten that I would have to return home and discuss with my wife first. This is a major decision for the family. There is a big financial concern and also a logistical one. Nok will have to be with little Zy throughout all his treatments and while she is away for all the extended treatments, who will be looking after our other children, V and Mij? We made a decision that we would go ahead with the treatment no matter what.
The thought of the millions of disabled persons in Thailand came to my mind. It is brutally apparent that the developed nations have the luxury of attaching more quality and value to lives. It is also brutally apparent that the medical knowhow in this area in Germany is years ahead of what we have here in Thailand.If I shall be spending all these resources to treat one child, why is it not possible for the treatment process to be properly documented and disseminated to potentially benefit the hundreds of thousands of disabled persons? If one cannot afford to use the best of materials like what they use in Germany, maybe they can use plywood or bamboo here. The important thing is understanding and learning about the treatment process.
(Little Zy’s case is one in a million because the growth of all his limbs is random and he has dislocated hip-joints. It would have been easier to treat if any of the upper or lower limbs were symmetrical.) The logic is if the doctors in Germany are 80% confident of treating little Zy, then the lesser cases would even be more treatable.
CHALLENGES VOL 2 ISSUE 2 2009 (Challenges Magazine is a journalism skills training project for persons with disabilities started in 2007)