A life turned upside down by the arrival of leukodystrophy
Diagnosed at the age of 3 when her little sister Maelle was just born, Mia suffers from metachromatic leukodystrophy. Fortunately, the baby’s genetic test was negative. But the disease was progressing rapidly, and Mia could no longer sit up on her own. She was quickly taken into care at the Pediatric and Rehabilitation Hospital in Bullion (78), and fitted with a seat corset. Three days a week, educators, occupational therapists, a psychologist, a nurse and auxiliaries work around Mia to make her stays moments where, quite simply, she feels good.
A daily routine that requires constant readjustment
“The aim is for Mia to have the best life possible,” says Thomas her father. Together with his wife Audrey, a nursery assistant at a center for disabled children, they have had to face many challenges to ensure that family life and their battle against illness go as smoothly as possible. As well as keeping their spirits up, and paying attention to Maelle, the parents face administrative and financial challenges. And in the house, ELA has helped to equip the bathroom: “Without the extra work surface and the adapted bathtub, I had to put Mia on the floor, it was complicated” as Audrey recalls.
Audrey and Thomas draw their strength from the little details of life. When it comes to meals, for example, Mia can no longer eat on her own, and is now fed through a tube. But a bit of chocolate ice cream seems to delight her so much, even though she can no longer speak. Or when the two sisters, lying together on the floor mattress, enjoy massage balls or a column of bubbles.
You never know how leukodystrophy will diminish Mia’s abilities from one day to the next… If the family around Audrey, Thomas, Mia and Maelle is there when they need it, they know they can also count on “the big ELA family”: “We’ve made friends there with whom we can find solutions at every stage.”
Material assistance, moral support, administrative support…
Every day, ELA helps relentlessly
ELA is an association of families for families. For us, supporting them is a historic mission and a priority. Since its creation in 1992, nearly 16 million euros have been devoted to supporting families. The association provides support at every stage of the disease and in all aspects of daily life:
• Social and administrative support
• Psychological support
• Support for caregivers and respite
• Information for families
For Mia, her parents, her sister and for all families with leukodystrophy, your support is essential: