A five-year-old child is suffering from a strange syndrome that has not yet a name

April 30, 2019

Charlie Parkes is one of 6,000 UK children born each year from a genetic disease so rare that doctors can not decipher what they have.

A five-year-old boy called Charlie Parkes suffers from a rare disease that does not have a name yetbut always face problems with a smile.

This is one of the 6 thousand boys of the United Kingdom who are born every year with a genetic disease so rare that doctors can not decipher what they have. For this reason, they decided to call it SWAN, by its acronym in English, which means "Syndrome without name", also known as ideopathic disease.

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Doctors think that each case of these children is unique. "Without diagnosis, families can feel isolated and have difficulty finding treatments," he said. Laura Parkes, mother of the little one.

In addition to suffering from sensory processing difficulties, hyper mobility, allergies, weakened immune system, digestive complications, anxiety and behavioral disturbances, the boy of 5 years is being badyzed to determine if he is suffering from autism. Doctors also evaluate condition of the connective tissue.

"Suddenly we saw ourselves in a world of gastric tube feeding and medical calendars, we feel very lonely, and at one point 20 doctors looked at different problems," the mother of Charlie

The family lives in the county Northamptonshire, in the center of L & # 39; England. When I was a baby, the baby did not babble and did not sit well like other babies. However, Laura and Steve, The parents of the child worried about something more important: keep him alive.

Even, the mother of Charlie He confessed that the professionals themselves had made them believe that it was their fault: "We lost family and friends who accuse us of inventing Charlie's problems because we do not know what's going on." We have no diagnosis that can be searched in Google. "

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The child's family found support in an organization called United Kingdom SWAN UK. It holds awareness meetings on the last Friday in April of each year, and they call it the Undiagnosed Children's Day. In addition, Chloe, his seven-year-old sister, is a "protective iron" of his younger brother.

It is likely that Charlie Never get an official diagnosis, but the family is ready to accept that. As for the future, Laura Parkes He expects his son to remain as "happy and resilient" as he is today and learn to "accept his idiosyncrasies".