Friday 5 December 2014

And this is why the Telethon is important

Dear Val and Malcolm,
Thanks for your message, it feel always good to know that people care (sometimes you believe you are on your one, even if you know you aren't!).
Sorry that I didn't keep you updated but we have a had a very difficult time. Laurent is not doing good at all. Not able to go to school or even leave the house. The good moments are rare. We are waiting now for a call of Purpan hospital for a date when he will be hospitalised. The problem is that they don't can't do much for him, only chasing a diagnose. And only genetic research can tell what's going on but that can take years. For us as parent we are convinced that it is myasthenia congenitale but the docters need more proof for that. Laurent has tried a medicin two years ago called Mestinon. But in the 60 mg form. We gave it only for 2 month because it caused belly pain and we thought it didn't work. He got it to short to say if it works, we know now. But docters say , if mestinon doesn't work it isn't Myasthenia. As parent you don't accept to do nothing. So we heard that there is another form of Mestinon, 10 mg which works with a lot of people with Myasthenia without causing the side effects. Unfortunatly it is not available in France and France doctors are not allowed to help you to get it. So we fought for months to get it here and after a lot of struggle we received it last monday (what a good start of december). We are afraid to be optimistic but he is on a very low dose and we see changes. He tells us also that his body is changing. He is very tired at the moment, as we think his body is coming to rest now. We know that he will always be quick tired and have muscle weakness but if he can enjoy live, we are happy. With or without diagnose. So, we will see what it brings in the next couple of months, highen up his dose. And if he continue to feel better and stronger, tell the docters here, see what they say. Hopefully he can enjoy the christmas time more than last year, when he was in bed.
Sethi has had a rough year also. He was hopitalised for 5 months in the beginning of the year for 'autogreffe'. If there is no bone marrow match available for him, they changed his own bone marrow. Very heavy treatment but this boy has a future now and that is a big change. Azizah, his mum, is still overwhelmed with that idea. Last year we didn't know if he still would be here with us and now he is going to school twice a week a couple of hours! The sad thing is that the professor is not completly satisfied with the outcome, he had expected better results, that is hard to hear after all that suffering. His plaquettes are still very very low which is dangerous and for that Sethi needs to have a transfusion every monty minimum. So live changed enormous but he may need to have a greffe of the bone marrow, so please everybody for Sethi and a lot of other children go to
http://media.wix.com/ugd/f5b8aa_335cfe93efff47b4b5804400e5d3bf84.pdf to register.
This weekend you can see Sethi on televison, Saturday morning france 2 at 10.08 orhttp://www.francetvinfo.fr/societe/video-le-telethon-demarre-demain-soir_764715.html . And they are today in the Ladepechehttp://www.ladepeche.fr/article/2014/12/05/2005513-sethi-5-ans-va-temoigner-demain-matin-plateau-france-2-2.html
There is a big age difference between Laurent et Sethi (3 years) but if they are together there is an understanding, very special. If they play, Laurent is going to rest when he is tired (he is not doing that with other friends).
Hopefully you all are going to enjoy the activities of Téléthon Weekend. Be sure, it really helps us from daily live to very complicated research. Always overwhelmed with the help and contact of AFM (if we have an appointed in the hospital or centre the reeducation and they know about it, they will be there to help you for exemple!)
Thank you all for your support,
Miranda 
Val says now does that email make you feel humble. No one gets through life unscathed but some have more cares than others.
Our thoughts are with both little boys and their parents  for the New Year.