A couple from Roanne recently learned that their children suffer from a rare disease. They decided to raise funds in order to enroll their children in a clinical trial and try to save their lives.
Young parents of two children aged 1 and 5 from Roanne, Tomy and Fahra are fighting to be able to help their little ones. Indeed, their young children suffer from an orphan neurodegenerative disease diagnosed a few months ago. It is about the disease of Sanfilippo type C also called “infantile Alzheimer’s”Which condemns their sons to a life expectancy of 15 years.
Terrible news for parents who have seen their life plans slowly disappear. “Parties and birthdays are meant to be happy times. We are afraid that this will lead us to more suffering”, Explains Tomy to Progress. However, for the moment, for their sons Eden and Abel everything is going well. Eden goes to school normally. But they are aware that the situation is likely to change quickly.
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A call for donations to save their lives
Sanfilippo’s disease is rare and affects only 1 in 100,000 children. In addition, the medical profession is not documented and struggles to offer solutions. Indeed, only 150 cases are recorded in France. But even if the number of cases of this disease is very small and little publicized, young parents are not let down. After a long period of research to learn more about this disease, they decide to call for donations to enroll their children in a clinical trial.
So, before time is short and the situation deteriorates, some people bravely support the couple and help them raise the funds necessary for the integration of the two toddlers in a clinical trial. To complete the appeals for donations, a group has organized itself into an association “So that Eden and Abel may live” with flearn about this disease and launch events that will raise funds.