I've been keeping up with the story of two sick boys, Oliver and Max, with heavy heart. People say that when I have kids of my own, these topics will affect me significantly more. Even though I'm still not a mother, I cry at every new piece of information. Where's justice in this world? How can it be that one can receive treatment for spinal muscular atrophy that can help him survive, and the other can't? I can't imagine what little Oliver's parents must be going through...
Both boys suffer from the most severe form of spinal muscular atrophy, SMA for short. A few months ago the whole nation was contributing funds in a fundraiser for an extremely expensive gene therapy treatment for little Max; over fifty million crowns was raised.
Then came Oliver, the same diagnoses, same fundraiser. Little Max received the treatment in Motol and he's started doing better. Oliver was promised the treatment, but lo and behold, Motol refused to administer it, god knows why. The doctor claimed that the risks of administering the treatment would greatly outweigh the possible benefits, considering his current state.
And I say - so what? What's the worst that could happen after the treatment, other than what can happen without it? Can you imagine what the desperate parents must feel like, after they've gone through the harrowing ordeal of sharing their story, photos, organizing the fundraiser, and I'm not even talking about the complicated care. They were so close! And suddenly the dream of having a healthy, or relatively healthy son has vanished into thin air.
Time's ticking, the treatment should be given to children before they reach 2 years of age, and little Oliver's second birthday is coming up next month. Now they are negotiating with a clinic in California. Does a family from Moravia seriously need to trudge that far to save a Czech toddler, when we have the treatment here at home? I don't get it, even if I don't want to slander the doctor. She's an educated person and she had her reasons for a decision of this magnitude, she even disclosed them to the media. Well, doctors must make difficult decisions every day...
On the other side of the wall
Little Max's parents must be happy, they are happy. They got the treatment. Their son is doing well. However, I was floored when I learned that they stand behind the doctor's decision not to give Oliver the treatment too! For the parents of a sick child looking for the light at the end of the tunnel, this must feel like being stabbed in the back. Like, what? We're in the same situation as you are, but you agree that our son has no chance at life?
On the other hand, it's no surprise. In the end, all of us are looking out for ourselves, fighting for our team. He who pays the piper calls the tune, right? If they hadn't taken the doctor's side, they could make her mad, and what if they still needed her, right? Actually, they do still need her, little Max is in her care. Maybe I'm being unfair to the doctor or Max's parents, but from my layman's view, that's how I feel. Reality is often survival of the fittest, or of those who were at the place at the right time. But let's not kid ourselves, they do say "silence is gold". Whether we like it or not, we're often forced to be quiet and fall in line. I'm sure that Max's parents feel sorry for Oliver...
Who decides our future?
You can't choose what kind of family and what shape you're born in. We we can choose many things in life though - friends, education, occupation, however, how and when we die is also out of our hands, unless w commit the perfect suicide. For dying voluntarily we'd have to go to Switzerland, where euthanasia is legal.
It's easy to put somebody's confidence down, a child at school, when the teacher's awful, little Pepa from next door who's bullying others... but one grows out of that, comes to terms with it. Some have that chance, at least. We have the chance to decide what path to take in adulthood.
I know people are dying every day from various illnesses, and I know karma doesn't always work, what goes around doesn't always come around, sometimes bad things happen to good people. Little Oliver may not have any idea what's happening around him, but he must be aware that his parents and those around him aren't okay. That they are stressed out, afraid. Surely he doesn't enjoy staying in hospitals, getting tubes inserted into all parts of his body. Jesus, I hate even just getting blood drawn so much, and this little thing has even had a tracheotomy.
What would we do?
I keep wondering what I'd do if I were Oliver's mother... I'd either have had a mental breakdown already, or I'd fight? Would I have found as much strength as mr. and mrs. Kovalský have? Would I just take the rejection and wait for my miracle baby's last breath? How long can one manage to take care of a child this heavily disabled, not just emotionally, but physically? Not just Oliver's parents, but all those fighting for their life, for their time in the light, have my endless admiration. Life is simply not easy, you have to really fight for it and sometimes we need help, whether it's from somebody up there, or just a friend. Personally I hope that they can help the boy in Los Angeles, when we can't do it over here...
I'm interested in your opinions. Should the parents keep fighting, or should they just give up, because their child's illness is so terrible that he'll never have proper quality of life...? What would you do in their place?