Olivier Cressens, Killian’s father, will cross France on his bicycle to raise funds for the benefit of children with Angelman syndrome.
To talk about his son’s illness, a father embarks on an incredible journey. 1er May, Olivier Cressens left by bike to cover 800 km. A 7-day trip dedicated to Killian, 16, with a rare genetic condition called Angelman syndrome.
About ten police officers, colleagues and friends of Oliver Cressens, accompany him. Some complete the challenge by bike and others on foot from Denain (North) to arrive in Rive-de-Gier (Loire) this Sunday, May 7. Killian is expected to attend the event hosted by the town’s rugby club.
Intensive preparation
Since their departure, a chain of solidarity has been formed. The town halls of the stopover towns, local associations, traders have mobilized to raise funds for the benefit of disabled children in partnership with the French Association of Angelman Syndrome (AFSA). Part of the donations also allow runners to eat and find shelter.
Before facing these 6 140 km long stages, Olivier Cressens prepared for months. In five months, he cycled 1,600 km. He also benefited from the advice of the former yellow jersey of the Tour de France Cyril Dessel. A feat for a man who had very little pedaling until now.
Severe handicap
But above all, it represents a very beautiful gesture of love between a father and his son. Attention that Killian will surely not perceive, confided his father on the set of CNEWS. His illness causes, in fact, a very serious physical handicap, but also a severe intellectual deficit. His mental age would be close to that of a child of 12 to 18 months. The adolescent will be dependent on an adult all his life.
The prevalence of Angelman syndrome worldwide is unknown. Experts estimate that it varies between 1 in 12,000 and 1 in 20,000. The pathology is due to the alteration of one or more genes on chromosome 15.
According to the Orphanet rare disease portal, the manifestations of this syndrome become characteristic between the ages of one and three years. Babies have a very poor learning capacity, language disorders – language will never be acquired, or motor disorders. One of the great characteristics of these children is their joviality accompanied by unexpected laughter.
Their management is based on physiotherapy, psychomotricity and occupational therapy sessions. The speech therapist is also a great help. The Orphanet site also emphasizes that psychological support is essential for the family. “Heavy medical care, decisions about treatment and the way others look at your child are difficult to bear alone,” notes the expert site.
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