Courteney Leahy Geasley from Cobh, Co Cork suffers from Velo Cardio Facial Syndrome in which part of the 22nd chromosome is missing.
There are many medical conditions associated with the condition, including cardiovascular defects, feeding difficulties, gastrointestinal problems, immune system problems, growth issues and kidney differences. Up to last month Courteney had to be fed through a tube in her stomach.
In late March, she and her mother Sonya flew to the Children’s University Hospital in Graz, Austria, to enable the youngster to partake in a highly respected feeding programme.
The Graz Model is a tube weaning programme run by a small team of dedicated experts. For the last 15 years the team has treated 500 infants and children, with a staggering 96% success rate.
Courteney is unable to even swallow her own saliva and had to be suctioned a lot. She also needed a monitor at home as she would stop breathing every few minutes.
She had to have a feeding tube inserted and was in constant pain from the site around the tube which got sore and acid leaks from her stomach which caused burning.
A total of €20,000 was raised by the people of Cobh to pay for Courteney’s care in Austria. Courteney’s mother Sonya said she was amazed at the progress her daughter made in just one month at the specialist hospital.
“I just couldn’t believe when they said they would remove the tube. I was so happy.
“She only ever had the tube from when she was a young baby and now she is doing great and eating things like mashed potato for the first time. I thought she would have the tube for the rest of her life.”
Whilst in Austria Courteney received speech therapy, occupational and music therapy in addition to the feeding programme. Sonya hopes to bring
Courteney to the US later this year for speech therapy with specialist Dr Robert Shprintzen.