Help M'y Son With Kabuki Syndrome

help my son fight his Kabuki syndrome a rare disease, we are parents who are powerless to take care of our child, and give him a better life with his little family. Kabuki syndrome is a disorder that affects many parts of the body. It is characterized by distinctive facial features including archedeyebrows; long eyelashes; long openings of the eyelids (long palpebral fissures) with the lower lids turned out (everted) at the outside edges; a flat, broadened tip of thenose; and large protruding earlobes. People with Kabuki syndrome have mild to severe developmental delay and intellectual disability. Affected individuals may also have seizures, an unusually small head size (microcephaly), or weak muscle tone (hypotonia). Some have eye problems such as rapid, involuntary eye movements (nystagmus) or eyes that do not look in the same direction (strabismus). Other characteristic features of Kabuki syndrome include short stature and skeletal abnormalities such as abnormal side-to-side curvature of the spine (scoliosis), short fifth (pinky) fingers, or problems with the hip and knee joints. The roof of the mouth may have an abnormal opening (cleft palate) or be high and arched, and dental problems are common in affected individuals. People with Kabuki syndrome may also have fingerprints with unusual features and fleshy pads at the tips of the fingers. These prominent finger pads are called fetal finger pads because they normally occur in human fetuses; in most people they disappear before birth. A wide variety of other health problems occur in some people with Kabuki syndrome. Among the most commonly reported are heart abnormalities, frequent ear infections (otitis media), hearing loss, and early puberty Our hope is yours, your contributions will help us save and give back the life of our child to his family. Our child lives in difficult and almost precarious conditions. Help him save his face and not feel his difference. Thank you from the heart. May heaven be rewarded.

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Organizer 


Radhia KOUR 
Organizer
Argenteuil (Val-d'Oise), France
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