The story of miranda
Laurent has health problems from his birth of. Till he was 5 years old nobody believed him or us the parents. Then they told us that he has a neuromuscular disease and probebly Congenitale Myasthenie Syndrom. A very rare genetic disease in many forms and still so much to research. Laurent will be 8 next week but till december last year we couldn’t confirm his diagnose. From december last year his is taking Mestinon, a medication which unluckely in Franch is only available in 60 mg and that is to strong for Laurent. We are lucky, having contacts in Belgium who prescribed the 10 mg. And family is sending it to us in France. Live changes enormously. Laurent find out what it is to be alive. Not staying in bed for the whole day, not having pain, not able to be a child. Last week he went for the first time in his life every day to school. For an hour and a half each day but he did it! The problem with this disease is when Laurent has a good day, you won’t see much of the illness but on a bad day, you won’t see Laurent. In France diagnose can only be confirmed by genetic research and as exoom sequencing is not allowed, it can take years (we are waiting for more than 2 years now and the docter told us that it can take many more). Thanks for everybody who cares, who wants to listen/read our story, and who are fighting for them.