Pyrénées-Orientales: Yann, 11 years old, is one of the rare children in the world who suffers from a disease that combines Alzheimer’s and Parkinson’s.

Infants born with neuroaxonal dystrophy (DNAI), a rare neurodegenerative syndrome – affecting only 5,600 children worldwide – characterized by psychomotor regression and neurological damage, Yan, 11 years old, is a cheerful and courageous little boy who wants to live like all teenagers his age. His family fights him tirelessly.

A fighting mother as much as a courageous mother, we can without exaggeration describe Ingrid Filiatre as an admirable woman. Full of modesty, however he likes to define himself as such “In short a mother, who naturally protects her children, and especially the most delicate”. This is because this comparable neurodegenerative condition, “In the combination of early Alzheimer’s and Parkinson’s diseases “Doesn’t fall into indifference, which Ingrid fights tooth and nail. And last October made “Vencre la DNAi” , an acronym for infantile neuroaxonal dystrophy. The purpose of the association is

“To raise awareness among the general public about this extremely rare genetic disease that affects only 5,600 children worldwide, to raise general funds to advance medical research, particularly through the sale of small homemade leather jewelry at the market (collecting 1,800 euros this way came and donated), and other solidarity programs. And discussion groups on social networks, parents of France and other places related by DNAI meet, exchange and advise”.

“Yan often lost his balance and had difficulty keeping his words together…”However, inside this happy house, everything started normally. About three years after the birth of the eldest, Mark, who is now 14, Yan was born, a beautiful chubby baby. Mother says, ” Yanan experienced growth and development without any delay, up to the senior kindergarten section. It was around the age of 3 that he started losing his balance and often fell. And then, language problems appeared very quickly with difficulty remembering words. So we took the bull by the horns and visited the medical profession. It was the pediatrician who first alerted us by saying, “There is something really unusual….this ” something”In the life of Filliatres, a real obstacle course has been transformed. “

The exams, the evaluations, the brain MRIs that detect anomalies, this constant hot and cold blowing leading to this genetic testing that is unimaginable, leaves us all empty, exhausted. But strangely, relief. Although the news was terrifying, we finally knew what our son was suffering from. And it made us stronger than ever.

“We will never give up”In his misfortune, Yan, a lively, cheerful, intelligent young boy, also bilingual in Catalan French, cycling fanatic and drum player, is “lucky” to have a slowly developing pathology. ” He never complains and wants to live like all kids his age. Additionally, he has made great strides in language and motor skills. This is what gives us hope and throws all our strength and determination into battle. We will never give up”

Between smiles and tears, Ingrid takes a filial breath.Contacts: or 06 51 98 03 27 or where a participating prize pool has been placed online. Among the planned events: May 9, at 12 noon in Pézilla-la-Rivière, lot auction (price: 1 euro), followed by a children’s show; and June 16, 1 d

Unity race over 4km, 10am, around Lac du Soller. Participation is free and open to all.

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