My son Brendon was born in 1986. By the time he was 3 years old, all he could say was “Dada”. We were slightly worried about his progress so we took him to a specialist who said that they weren’t sure what the problem was. We moved back to our hometown when Brendon was 4, and took him to another specialist. This doctor took one look at Brendon and said that she thought he has Fragile X Syndrome which is a type of Autism. We asked her how she could come to that conclusion just by one look at Brendon. She told us that Fragile X boys usually have similar facial traits, which is a long face and big ears. She explained to us that Fragile X Syndrome was not widely known by the medical fraternity at the time and had only been diagnosed worldwide in the early 1980’s. Medical research had shown that this Syndrome had originated in Ireland several hundred years ago.   The doctor then told us that the mythical character, Peter Pan, and his Irish pixies were all depicted with long faces and big ears. They were depicted this way because of the fragile X boys who were treated as village idiots for many generations.

 There were mining companies back then who would mine a piece of land for minerals and whatever else they could take from the soil. After they had finished and moved on, people would squat on the land and grow crops which they would live off of and sell their produce at markets. The soil that they were growing their food in was missing vital trace elements and minerals which affected newborn babies DNA because of the deficiencies in their diet in the womb. This caused gene mutation which affected the blood chromosomes. Under a microscope, our blood chromosomes look like ‘XX’ for a female and ‘XY’ for a male. When the bottom legs of the ‘X’ chromosome appear to be fractured and floating, then that person is carrying the Fragile X Syndrome gene. 

 The female has 2 ‘X’ chromosomes so if one is fragile then she has the other one to back it up. Females are affected in different mental and physical ways such as anxiety, depression, thyroid problems, auto-immune issues, fibromyalgia(chronic pain and tiredness), migraines and sleep disturbance. The carrier of this gene comes under the term “pre-mutation carrier” and is susceptible to some or all of these conditions. Usually the female is  not affected to the same extent that a male is. The male only has one ‘X’ chromosome so if that is fragile then he will be mentally and physically affected at some level or other. There are different levels of severity of this Syndrome. My son Brendon is deemed to be a moderate case by his specialist. Even so, raising him was quite a challenge as any parent like me would know.

  Through blood tests, we discovered that Brendon’s mother had unknowingly passed the gene onto Brendon. Her own mother had passed it onto her. Because her mother left the family and lost contact for over 15 years, Brendon’s mother never knew that she had cousins who had Fragile X children. If she had of known that she carried the gene, she said that she would never have had children herself. Brendon has an older sister who is not a carrier.    

  We had to medicate Brendon from when he was 6 until he was 16. He also had a type of epilepsy which would manifest in severe tantrums. I didn’t like having to medicate him but I felt that I had to so we could keep our family together and have some sort of half normal life. By the time he was 16, Brendon had become much more sensible and calm so we were able to ween him off the meds. He needs supervision with cooking, personal grooming, and transport but apart from that he looks after himself and is no trouble whatsoever. He struggles with reading and writing so we have to manage his finance and paperwork for him. He receives a disability pension and probably always will. Everyone who meets Brendon love him and enjoy his conversations and cheekiness. All his cousins think he is the best cousin  anyone could ever have.