With the summer holidays comes the time for carelessness and leisure. But for children affected daily by illness or disability, and for those around them, concerns limit the relaxation of the leave. Paris-Normandie has heard from three little patients mentioned earlier in our columns.
Maély smiles at life
Maély, now 8 years old, suffers from neurofibromatosis and the absence of a bone in the tibia. “After two failures, the third operation to transplant a piece of bone is on its way. Maèly lives this situation and its disadvantages as calmly as possible (his left leg is 6 cm shorter than his right leg, editor’s note). His shin must be able to fit into the shoe, with two sizes more. She got used to it, as did the weekly sessions with the physio.”confides in his grandmother, Muriel.
If it is necessary to continuously acquire new pairs of shoes and new trousers, there is no question of sacrificing these expenses to inflation. The little one never complains. As for the high summer temperatures, she overcomes them in the swimming pool in her garden.
At the start of the school year, she would like to join the CE2 class at the Jean-Moulin school in Bernay. Adjustments to school hours may be necessary as the girl had missed a hundred days of classes last year.
Océane, a fragile heart
Océane, 15, from La Chapelle-Gauthier, for her part, is climbing the slope but is still very fragile, both medically and psychologically. Suffering from a rare genetic disease that also affects her brother, Hugo, and her mother, Julie, the teenager has been permanently fitted with a defibrillator since her heart attack in 2014, which works properly but requires vigilance. .
“The cardiologist set the machine to 50 beats per minute. It will be necessary in a little more than four years to decide whether we are satisfied with simply changing the battery, or whether we start from scratch, at the expense of a difficult and delicate operation. It is still too early to decide.”says Julie.
Unlike Maèly, the teenager did not benefit from any support from her college friends. After attending her school part-time and after CNED training the rest of the time, Océane will do all her schooling at home from the start of the school year. Tailored teaching, adapted to her state of fatigue, and relief for the young girl in pain.
“His grades have increased since we adopted this system. Océane will complete another 4th to catch up », Julie continues. With the association she founded, against rare diseases, she was able to raise around €1,000 to fund genetic research.
Albane, between difficulties and hope
A third child experiences an obstacle course in Courbépine daily, with the support of his whole family. Albane, now 6 years old, suffers from daily epileptic seizures. “A clinical trial should take place in the fall to try to eliminate the attacks and reduce their severity. We also learned that a gene therapy specifically targeting CDKL5 would be introduced to replace the defective gene. We were told that it would take a year and a half years to start the process.These scientific advances are a great hope for us
“, entrust the parents to the little one.
Meanwhile, Albane cools off in the pool with his older sister Lina, 9 years old. The little girl’s ordeal evokes a great outpouring of solidarity. The child now has a shower trolley. In collaboration with the Café de l’Équerre in Bernay, the Norman “Spiders Bikers” have mobilized for what they might do next year for Océane.