The beautiful image used here is © Tom Sierak and entitled "God, Life, Love".

Sometimes stories regarding children and adults with rare trisomies appear in the papers. Sometimes these stories reflect a need of our children. The story of Luke Winston-Jones is one of those. I invite you to read Luke's Story and support his mother in her fight. Alex's own news clippings appear on their own webpage to access it please click the newspaper

I am the parent of a child with Trisomy 18, his name is Alex. Perhaps you have already "met" Alex in the rest of this web site. A lot of people see those of us with older children as zealots. People who are possessed with an unreasonable zeal to keep our children alive at all costs.

But we are not, we are parents of special children and each of us have a story to tell, some were told that their child would die and they didn't, some have their children here simply because the doctors made a "mistake", some had a faith and strength inspired from more heavenly places.

Some of our children have had heart surgery, some haven't, some have had other surgeries, some haven't. Some have feeding tubes, many don't. Some families made surgery decisions based on "mother's instincts", some only agreed to surgery after they saw with their own eyes that the doctors were wrong and our children are precious very aware people. And yet there were still others who would not allow any surgery.

There are no zealots though. We each have our own beliefs of what is appropriate, no two are the same.

My personal belief is that my son should be treated as any other child. He has had 4 cardiac arrests now and more respiratory arrests than I care to remember. But each time he was resuscitated and each time we decided how far we would go with treatment AFTER the immediate crisis was over and everyone was thinking in the clear light of day. How can anyone decide these things, days, weeks, months ahead. Every situation is unique.

Each time my son has fully recovered to run, play and continue his non-stop talking. Most people do not even know the battles he faces when they meet him on the street. His zest for life is unbelievable. Like most mothers though I know in my heart that when it comes time to say goodbye to Alex I will let him go because I will know in my heart that it it is time. And I know that one day that day will come. But until then I will enjoy my child and love him and he will enjoy life and love every person in it.

I believe that it is each parents right to decide these things. Not doctors, not courts, not strangers. We are the ones who love our children, who care for them day in and day out. We are not special we are motivated by the strongest emotion that there is - love. But love is kind and not one parent enters any of these decisions lightly, not one would make their child endure procedures if we did not feel it would ultimately enhance our child's quality of life. And they have a wonderful quality of life.

And the quality of life is one subject that we often disagree with doctors on. Many doctors say that our children will never recognise their parents, that they never do anything, and are unaware of their surroundings. This is so wrong. Even the most severely effected of our children play with toys, reach out to grab our hands or be picked up. They sit on their own, make choices and certainly let us know their displeasure. Many even walk with a walker.

Most of our children will never hold a job or have children of their own. But they love THEIR life. Its different to ours but they are happy with it, in fact they are probably happier than most people in this world. Was the quality of life of my grandparents ever doubted because they didn't have a colour television or air conditioning? No - and just as my grandparents never missed what they didn't know, neither do our children.

Many people have different lives to us, a different quality to their life, and we do not question their right to do so. Why then do people feel that they need to question the quality of life our children have. They are happy and love THEIR life - and that's all any of us want.

I would not presume to tell another parent what to do. And if I am honest before I knew Alex and the hundreds of children still living and enjoying life each day, just like him, I would not have even continued my pregnancy. But that was my decision to make just as it is my decision whether to allow surgery or not.

And so I lend my support to Ruth because above all she is a mother, just like me and this is her child. I will keep a single candle lit for Luke and his family until a decision is reached. My prayer is that I will be blowing out my candle only because Luke and Ruth have been able to take their own candle to light the way through the wonderful journey of life that lays ahead.

"Thousands of candles can be lighted from a single candle,
and the life of the candle will not be shortened.
Happiness never decreases by being shared."

-Buddha-

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