A Canberra mum has formed a charity foundation in her son's name refusing to sit by and watch him suffer from a rare genetic condition that may claim his life.
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After more than 15 admissions to the Canberra Hospital and the horror of seeing him turn blue and stop breathing, Caitlin Hatley decided she had no choice but to act for her son Kai.
Four-year-old Kai Hatley suffers from Mecp2 duplication, a rare disease which causes low muscle tone, intellectual impairment, limited speech, neurological regression, seizures and recurrent respiratory infections.
"This condition significantly affects the lives of boys across the country and all around the world but it is a condition that few people have ever heard about," Ms Hatley said.
"I felt helpless at the moments where Kai was so sick from infections that he required emergency resuscitation at the Canberra Hospital.
"I decided there and then that wherever I could do something to make a difference for Kai or someone else's boy, I would."
The Kai Hatley Foundation hopes to fundraise close to $200,000 to fund genetic research into the rare condition by the Rett Syndrome Research Trust in the United States.
Ms Hatley said Mecp2 had nearly claimed Kai's life on multiple occasions, due to various bouts of pneumonia and surgeries to manage his condition.
"While this condition severely limits the lives of affected boys and their families, there is hope," she said.
"Progressive genetic research in America has reached a point where just under $200,000 is required to fund the next round of research and even start clinical trials.
"When this important financial hurdle is jumped and a clinical trial begins we are hopeful that Kai would have an opportunity to participate in it."
Ms Hatley said Kai was diagnosed with the rare condition in May 2012 but had always suffered from poor health, often confusing medical experts.
"A couple of days after his birth, he started turning blue and stopped breathing and no one could really figure out that the problem was," she said.
"He didn't start walking until he was three-years-old and a lot of children with this disorder never walk at all."
The foundation will be holding a fundraising event on Kai's fifth birthday on May 31 and has appealed to Canberrans to donate venues, catering services and their participation.
"To me, Kai is just as deserving of a normal life as the next child and if we have the opportunity to give him that or to improve his quality of life that would mean the world to me
"I urge Canberrans to take the time to firstly learn a little more about this condition, about how it affects not only young boys but also their families."
