A kindly man in Tumbler Ridge has taken it upon himself to organize a benefit. Real Carrier is planning a benefit for the Bray family of Tumbler Ridge.
It has been a long haul for the Brays. It was 15 years ago that they brought home their son Luke, after an extended stay in Edmonton, Alberta, following his birth on March 22, 1990, in Dawson Creek. The Brays felt they should take their newborn son to Edmonton to have some concerns investigated. He was diagnosed with Cerebral Palsy (CP), a non-progressive but changing condition. As well, Luke was diagnosed with Agenesis of the Corpus Callosum (ACC), which affects the body structure and also causes mental disabilities.
Luke?s diagnosis of CP was not without additional questions and seemed evident to the Brays and the medical staff involved, that Luke had additional concerns. He had, at different times, been diagnosed as both blind and deaf. Karen Morash, a health nurse in Tumbler Ridge, had done some simple testing as he grew and felt sure he was neither. At the age of four and half, Luke was diagnosed with Mobius Syndrome, a condition that is a type of facial paralysis.Sharon recalls the support from Tumbler Ridge that the family received when dealing with the early years of Luke?s development. ?This community has been so good to us. I don?t believe we would have had this kind of support except in Tumbler Ridge.? She adds, ?Luke is treated so normal here. He is just one of the kids.? The Brays are very appreciative of that. It was in 1996 that the community came together to raise money for the Brays to travel, Luke in tow, to New York to attend the first International Mobius Conference. Reluctant at first to believe their child had Mobius, the Brays felt a wave of relief when amongst those already dealing with it and so similar to their child. They saw examples of surgeries there that swayed their decision not to have eye surgery on Luke.
Luke?s bone structure is harshly impaired and the Brays were hearing how many surgeries their only son would be enduring in the years ahead. Because of his bone structure deformations, Luke was to have extensive surgeries on both legs; ham strings, groin, abdominal muscles and bone surgery on his left leg. Luke will begin those surgeries August 31st. when he and his father Brian will be in Edmonton for an estimated three months.
Their neurologist Dr. Richer at University of Alberta Hospital, after meeting Luke, said that he had been misdiagnosed with CP all these years. Luke has been diagnosed, rather, with dysautonomia, This disease is the dysfunction of the autonomia nervous system.
Brian confirms that the Government of BC covers the cost of surgery, travel, and accommodation at Ronald MacDonald House. Other expenses, individual travel and meals, are paid by the family.
The Brays have done a phenomenal amount of volunteer work for Tumbler Ridge and Real Carrier put it simply, ?It is time to pay back. They have done so much for the community and we can help them.? Sharon Bray is visibly uncomfortable with the kind gesture. She expects to donate money raised and not required by the family to Ronald McDonald House. Both of the Brays hope to bring some awareness to the many conditions their son has. ?He is a (medical) paradox? marvels Brian, proud of his son?s acceptance and endurance.
The musical benefit takes place August 13th in rooms 4 & 5 of the Community Centre, starting at 7:00 pm. Please consider joining them for an evening of music and friendship to help the Bray family.