Today I got a disturbing phone call from my son’s doctor at the hospital.
I am trying to change the home training verdict & therefore I had called the doctor to hear what exactly Tobias’ diagnosis is & to my surprise she tells me that he actually doesn’t have one, yet – they are just “calling” his “disease” a neurometabolic disease until they know more about it. But then she told me that Tobias actually is under the category: Neuro-generative disease, which means that if they don’t find a treatment that works 100% or at least know why he doesn’t have enough folic acid in his spinal cord then we need to face the fact that he can actually die from this – OMG did she say that & on the phone??? My world is definitely collapsing right now & I have been crying all day & somehow I just can’t stop again & I know that there’s still a change for my son to survive this but how? & for how long can he keep this “wrong development” going??? Our doctors in Denmark know nothing about this disease & haven’t seen anything like it before so how are they going to save my precious boy? Nothing matters right now other than I need to save my little prince but am totally lost. Feels like I am running a race against time & who will win? I need to win this one – I can’t lose my son!!! That’s simply not an option. But why are the doctors not sending us to another country when they can’t treat my son?
I had to tell my son’s father how seriously ill our son actually is today & he started to cry, of course he did but gosh that was the worst conversation I ever had to take. I need a miracle & I need it now. I know we all should wait on God’s blessing etc but seriously we can’t wait anymore, my boy is not well & he needs to be well!!! I can live with the fact that my son might be a little behind in development for the rest of his life but I can’t live with the thought of losing him, he’s my everything!!!
Dear God, please don’t take my son away from me, let someone out there in the world help us through this – PLEASE!!!
So if anyone out there knows anyone who is a specialist in the field of Neuro-generative diseases PLEASE give me a name or something.