In the second of our Family Focus features, Laetitia and Nicolas from Belgium, share their story about new diagnosis and how meeting a family who were so positive really helped in those early days.
‘Since her birth, Camille has been our sun during the day as well as our little star at night … she shines with her smile and her good humour. She illuminates our daily lives (and sometimes even our sleepless nights … laughs).
After the terrible announcement of her diagnosis in September 2019, a new adventure began, a fight! A challenge to this syndrome. 48 hours later, the anger subsides, the sadness is still present, but the tears dry, the radiant smile of our little Camille helps us enormously as well as the presence of all our loved ones.
Very quickly we surround ourselves with a “Rett” community. We meet the parents of a little “Warrior” who also has Rett Syndrome, we get information, we take an interest in this disease, we read (well especially Laetitia, my wife). We realise that there are multiple therapies to help her progress and avoid complications as numerous as they are.
We must quote them, since we met the parents of Lily, this little “warrior”, Sébastien and Charlotte, we have been strangely more at ease and we have come out of our little interview with our hearts filled not with hope of recovery, but with positive vibes and alternatives to a placement recommended by the medical world. We realised that in some cases “Rett” girls can walk, talk and use their hands.
Laetitia is even part of a group (where I myself am not admitted … laughs) of mothers who tirelessly share their testimonies with us about their lived experiences: specific food, physiotherapy techniques. specials, alternative means of communication, etc …
We decided to go for it and waste no minute so that Camille gains autonomy and freedom. As a result, we went to Poland to a neuro-paediatric rehabilitation centre in order to involve Camille in an intensive physiotherapy course where she could access multiple therapies as each as beneficial the other. Look at her smile!’
Many thanks to Laetitia and Nicolas for sharing their story with us. If you like to share a story too, more information about the subjects and timing here