Been out the meeting for 2 hrs sorry I haven’t updated you it went on for 4 hours snd am still trying to get my self together as it was the hardest meeting we have had so far 🙁
From hospitals point of view they said Alfie hasn’t come if vent because they believe it’s his condition not letting him! They reminded me that their is no treatment or cure for Alfie! He still has no hope! He is in in a coma that they can’t get him out of! They wish for us to agree with them to let him die with dignity and that he will never recover! Basically they still don’t no why he’s still like this!!
No plan or decisions was made during the meeting!
Also, the main highlight of the meeting was that they are continuing to work with us and if we do find a Dr he is willing to speak with them and if he believes they have a treatment or or a trial or test to do they will work with them 🙂
Our relationship remains good with his Dr’s and they are willing to talk to other Dr’s please people will people not slag or judge alder hey as we have a very good relationship with them 🙂
A key part of the meeting was they think it’s possibly mitochondrial as he has 2 variants in his mitochondrial results but they can’t diagnose it!!!
We expressed our feeling very strong and our wishes and what we believe is in Alfies best interest we strongly disagree with there views on his movements and they had no response.
We will be having another meeting next week so I can finish of what I have to say and my further opinions on where we are now and to outline other syndromes and diseases to clarify.
Please continue to support our boy and reach out to Dr’s who can possibly help our soldier the support is amazing and we can’t thank you all enough