THE father of a toddler who died after more than two years battling a terminal illness says he will continue to fight for other families facing the affliction.
Alex Alexiou said he would push for improved access to treatments for rare illness Sandhoff’s disease as well as improved cross-border co-ordination and help for families caring for someone who had the illness.
Mr Alexiou’s three-year-old daughter, Artemissia, died on December 13 from respiratory damage caused by Sandhoff’s disease in the months before she was diagnosed in 2008. Her funeral service was held at Murwillumbah’s All Saints Anglican Church last Thursday.
In the months before Artemissia’s death, Mr Alexiou and his wife, Kelly Ryan, had been struggling to get enough respite care support to help look after Artemessia, who required 24-hour care.
Mr Alexiou said he wanted to make sure that did not happen to other families.
“Things have to change; there has to be more co-ordination at a ministerial level (between governments),” he said.
Mr Alexiou had also helped pioneer new treatments that had helped Artemissia fight off Sandhoff’s disease.
She had improved dramatically before her death and was regaining her senses of sight and hearing.
Mr Alexiou and Ms Ryan had been preparing to bring in speech therapists to help Artemissia learn to speak.
However, the damage to her respiratory system had been irreversible.
Mr Alexiou said he also wanted to help set up systems to encourage early diagnosis and treatment of the illness so such irreversible damage could be avoided.