Bonding over Treacher Collins Syndrome

TWO young girls with a rare genetic disorder had a once in a lifetime experience when they met a UK star.
Eight-year-old twins Abbey and Bonnie Ashe met a 30-year-old United Kingdom television star Jono Lancaster this month, and bonded over their rare disorder, Treacher Collins Syndrome. About one in 50,000 children are born with the disorder which affects the growth and development of the head. It prevents the skull, cheek and jawbones from developing properly, causing facial defects and hearing loss.
“When Abbey and Bonnie were born they appeared to look different but our first thought was they are premmie babies and it will get better – but that wasn’t the case,” their mother Kate Hermon-Ashe said.
“Within three days after Abbey and Bonnie were born we had genetics, cranial facial, ENT and counsellors informing us that our girls had Treacher Collins Syndrome, this was very hard to take in and understand.”
The twins had had a number of obstacles, including jaw distractions, cleft palate repairs, fat grafting, and several appointments with specialists. Just before Abbey turned two, her breathing obstructed in her sleep and she had to be flown to the Royal Children’s Hospital and spent two weeks in intensive care. She then spent another four months learning how to walk, eat and talk all over again.
Ms Hermon-Ashe and her husband Brendan, who together also have children Tyson, 10, and Diesel, 7, joined a Facebook group of parents with children with Treacher Collins Syndrome. They all fundraised to bring Mr Lancaster to Australia.
Mr Lancaster is a television star and disability campaigner who visits schools to help people suffering from genetic disorders. He is also a Patron for the charity Life For A Kid and has starred in BBC documentaries ‘Love Me, Love My Face’ and ‘So What If My Baby Is Born Like Me’.
“Jono went through stages of asking ‘why me’ and lots of bullying. He was adopted but instead of being negative about his syndrome and struggles he has been able to find the positive and help as many families around the world as he can,” Ms Hermon-Ashe said.
“We had Jono come and stay with us from 7 to 10 November and he gave our family a lot of hope that Abbey and Bonnie can live a strong positive life. Abbey and Bonnie are just starting to become aware of their syndrome so it was definitely good timing.”
Mr Lancaster also told his story to students at Abbey and Bonnie’s school, Columba Catholic Primary School in Bunyip.
“Abbey and Bonnie are very strong girls, full of so much love and nothing ever gets in their way – full of life and laughter,” Ms Hermon-Ashe said.
“We hope by raising awareness of Treacher Collins Syndrome that Abbey and Bonnie are able to keep up their confidence and not suffer any bullying.”