Right, most of you reading this blog, know that I have a beautiful son, who suffers from an unknown illness.
Some time ago, I received a letter from a hospital, letting me know that Tobias’ doctor referred him to have a full gene analysis. It also said that I have to think really hard about it, before letting him have that blood test, since a full gene analysis reveal a lot – even things that has nothing to do with my son’s unknown illness. I did think about it, a lot, but when it all came down to it, I decided that this test was the best thing to do at the moment, but then I was told that they couldn’t guarantee that Tobias would have this test any time soon because it’s not something Denmark uses that often.
Then yesterday, I received another letter from the very same hospital, letting me know that I could come and talk to the doctor working in the genetics department… so I called the hospital today to hear if that means that my son will have that blood test?
Yeah, you can imagine my surprise (correction: my FRUSTRATION) – The doctor told me that she’ll call me back this Wednesday so we can talk about it all but she did tell me that she couldn’t tell if Tobias will have the opportunity to go through the full genetic test. Right now, they’re taking these tests on people wanting to have children (if there are some illnesses etc. in their families) and it really had to be urgent. So, a boy who’s been sick for 6 years, no diagnosis, just recently started to have unexplainable seizures, who could suffer from a very rare metabolic disorder isn’t urgent?!
Why is it that just because I’m a single mom, my boy is getting punished? Yeah, sorry – you might think that I’m being pathetic right now but seriously, a doctor wouldn’t refer my boy to this if she didn’t believe it was urgent and come on, the doctors are without any clues on what to do next.
I asked this doctor why my son couldn’t have it and how long into the future are we looking? Well, since I’m not trying to have another baby at the moment, he’ll be on a waiting list and timeline: 1-2 years from now?!
I’m so angry because why would someone even mention this kind of test to me if it’s not something we can have? I don’t even know if my son is alive in two years! It makes me sad and frustrated.
BUT, hopefully I can explain to this doctor how important this is! I am sorry if I sound selfish and yes, I know other people are suffering to and it breaks my heart BUT when it all comes down to it, I have to think about my son and how to help him the best! He’s my everything and I truly hope he’ll get this test. I don’t know if it will even reveal what’s wrong with him but what if it does?
The reason why the genetic department only pick a few families for this, is because tests are not analyzed in Denmark but abroad. Well, then dear Denmark; WAKE UP! Let this kind of tests be an opportunity for all people who are somehow suffering from rare, unknown illnesses. Don’t say no to a 7 year old boy just because his mom isn’t in a relationship where there are thoughts about having more children!