Myriam, mother of Lucie, 12 years old
Lucie is 12 years old. Born premature at 28 weeks, she is suffering from cerebral palsy: her motor impairment mainly affects the lower limbs, but she can move independently. She wears splints day and night, and uses a manual rest chair as she gets tired very quickly. Lucie has a twin sister who does not have any repercussions of prematurity.
From the very first months of her life, Lucie showed signs of a cerebral lesion, such as hypertonicity, no sitting station, feet in internal rotation for example. These signs were clear for professionals but were not explained to us. It is by confronting ourselves with the world of disability in the physiotherapy office where Lucie was followed that we understood. There is still much to be done in terms of diagnosis, announcement to families, and early management; being able to put a name on what our daughter was suffering from made us more aware and more active in helping her.
As early as 15 months old, Lucie attended two weekly rehabilitation sessions; but after four years we had to reduce to one session because we could not free ourselves from working commitments. Finding the right structure and a competent team (i.e. trained in cerebral palsy) is a true obstacle course: Lucie has experienced periods with no follow-up due to a lack of available physios! After the very difficult years of follow-up during early childhood, Lucie has been, since primary school, very well followed in a specially adapted establishment (EREA Toulouse-Lautrec). The physiotherapy, medical and orthopedic follow-up is coordinated by a single team. Therefore Lucie has made great progress thanks to a formidable team of physiotherapists. Arriving now at the beginning of adolescence, there is the question of surgery to straighten her "twisted" legs and some questions still remain: How can we manage muscular pain during physiotherapy sessions, the unexpected contractions that wake her up, the desire to make a sport that is not accessible to her and that of being like the other young girls?
Research on cerebral palsy is crucial in providing life comfort, medical responses to people with CP and preventing brain damage in newborns. With the increase in the number of premature infants, many people may be concerned and there are still a lot of topics to explore.