The tone of this post will be a bit different than the usual. It is a year ago today that we received the results of the genetic test that confirmed that Abris had SMA. A year passed and that brings up feelings. Maybe because it was one year ago when Hungarian doctors to let go of this boy holding up a piece of paper for reference – yet we are still here in Belgium, awaiting the 6th ilife saving injection! To the doctor who was the first to diagnose him I’d like to say: I guess it was worth it to believe we could be part of that lucky 20% – and we could celebrate lots and lots of birthdays together instead of just the first! Because these are lives, young little humans, not statistical data and I will do as much as I possible can to make this percentage larger and larger filled with success stories!
To Dr. #2 I’d like to say: when I received the “proof” of their death sentence and got told briefly to “go home and be with him as much as you can” – I did. I’ve been with him ever since and will always be with him. Always, in all circumstances. And I will do whatever I can so that my son can have the longest and best life. And the doctor, when asked by a layman parent about a certain treatment he may not be familiar with could possibly not be so ignorant and put some effort into educating himself instead of giving the comment that stops all going forward: “there is no cure for this”. So I’m asking, who is the professional here?
Lastly I’d like to thank my favorite person in this, who showed me the door within 10 minutes of our private appointment – with full charge – with the message that I should keep being on the road I started on (because where does the parent get the nerve to try to do the most she can for her son and may even go to the media), and that she cannot help, nor can she recommend a neurologist in the whole country who could take on Abris. And she did all that, while probably being the biggest name in the country in this field, knowing not only what treatment I was asking about but the names of all the hospitals that were in the European program as well. But she didn’t get any of the kids that she “treated” into this program…I’m gonna continue my mission. I can promise that it is up to me, there won’t be a child who’s life is up to her judgement.!
I am grateful for all the wonderful people who support us, send their love and positive thoughts.
A wonderful year is behind us. Yes, wonderful. We have experienced, learned a lot and we are stronger with every minute. That is why we are where we are now.