The Journal Entry of Charlie Whitaker
My name is Charlie Whitaker, and I was diagnosed with a rare disorder when I was just a newborn baby. This disorder prevents my body from producing red blood cells, because of this, I face many restrictions in the way I live. Everyday, I have to take medications and also undergo frequent blood transfusions to sustain my life. Unlike other boys my age, I cannot enjoy sports like they do, or I will start to feel faint and shortness of breath. I even have a personal nurse by my side so I can be under close medical care at all times.
Despite this illness of mine, I try to stay optimistic to make things easier for myself and my family, but sometimes, I feel like a hindrance, a burden that was stopping my parents from leading a happier life. I would really wonder why I am the one who suffers from this, and that life is so unfair. But I had to be so strong; everyone was watching me and I couldn't show how scared I was. Besides, my parents were struggling too; they have not had it any easier than me. I didn't want to keep bringing up what hurt me, it hurt them too. I wonder if they knew how I felt, but didn't know what to do.
It was until recently that my parents discussed with me a solution to this problem. They have decided to use in vitro fertilization to conceive another child, but include another step. Using new screening techniques, they would screen the embryos and only fertilize the egg which would be most able to donate blood-making cells to me. In other words, this new sibling of mine would be born to save me. I was happy beyond words; it meant that I was going to have a chance of living a normal life.
However, my hopes were shattered when news came that the Human Fertilization and Embryology Authority rejected our request as they felt that it was not right to create a human life with the intent to save another life. Their reasoning is that it will not be fair to this younger sibling of mine, since he will have a life bound to me, a life where he is obliged to undergo surgeries and transfusions. Yes, if this baby were to be born, he would have to undergo transfusions to save me. But it is for this very reason that he would be treasured even more. He would be my saving grace. I believe that my parents would treat both of us equally and all of us will shower him with much love and care, and he would be able to live just like any other normal child, not deprived of anything.
Of course, my parents can opt to let me live the way I live now, but there might be problems in the long run, like shortage of blood for transfusions in the blood bank. Also, in the case that the blood donated to me is unsuitable, and there may be tissue rejection which will pose as a health risk.
Using in vitro fertilization to conceive another child would be a permanent solution to my condition. My parents made this decision after consulting our family doctor, who also feels that it is the best choice. It would result in both my sibling and me being able to lead normal lives and also lessen the financial burden on my family. My parents would not need to be constantly worrying over me and spend more effort in caring for my sibling and me. It would be the best solution.
Other concerns are that this method is unethical and deprives the second child of his human rights. However, if my sibling is able to grow up in a loving family under the care of responsible parents, I do not feel it is much of a problem. Of course, if he has his own views about undergoing these transfusions, we will take in his opinion. I sincerely hope that the authorities will review this case with more compassion, and weigh the different factors before making a decision.
Posted by Gillian @ |11:50 PM|