Manon lives in Paris and she just turned 5 years old.
She has the same disease as Mencia.
To this day, Manon can’t move. She does not walk, nor can she even crawl on the ground. She does not speak either, which is not always easy to communicate.
Finally, she can’t do any of the daily activities on her own. We knew about Manon’s illness when she was 15 months old. The disease was not easy to tame but today it is part of all our lives.
For the moment we have been lucky that Manon can be welcomed in classic and inclusive day care centers but next year, when she will be 6 years old, we will not have any place assured for her. One of her parents might have to stop working.
On a daily basis, Manon has a minister’s schedule: she goes to the nursery every day, has 4 physiotherapy sessions per week, 2 speech therapy sessions and 2 psychomotricity sessions. We also do rehabilitation courses abroad.
Our life has taken a radical turn since Manon’s birth. We are obliged to live from day to day. We don’t want to project ourselves too much and risk being disappointed. We are fortunate to be surrounded by family and friends, but clearly our day-to-day life is nothing like it was before and nothing like a family with a healthy child.
Finding a medication or therapy that could partially or permanently cure our children would offer them a future with more freedom, more autonomy. Happy they are, but it would be a great happiness for all of us because our children deserve to be able to run, ride their bikes, not spend so much time in hospitals.
Research is long, it takes time, it requires a lot of money… but you have to invest, you have to give, because tomorrow it could be your child, or your grandchild who could be affected by a rare and incurable disease.
In any case, Manon is now in good health with her disease and she is a ray of sunshine that lights up our lives every day. She has changed us for the better and without her this would not have been possible.