Seventeen-year-old Olivia Farrar may suffer from WAGR Syndrome but she is not letting it rule her life.
Weeks after she was born her mum Sharon noticed she did not have any iris’s and she was diagnosed with Aniridia, usually involving both eyes. This left Olivia with severe sight impairment, photophobia and suffers with nystagmus and glaucoma.
Olivia has undergone numerous eye operations to control glaucoma and the removal of cataracts, with further operations pending.
Further investigations found that Olivia had WAGR Syndrome, caused by a mutation on chromosome 11 in the 11p13 region. This condition is so rare that doctors knew little about it and had to research it on the internet. An American author in 2010 said there are only around 300 known cases worldwide.
Sharon was later informed that there was a one in three chance of Olivia developing Wilm’s Tumour which is cancer of the kidney. Olivia was scanned and everything seemed fine. A second scan found a tumour and at four-months-old she had it removed. She was given chemotherapy for 12 weeks and further scans until she was eight. Recent investigations in America have found that people suffering with this rare genetic disorder have a 40 per cent chance of developing chronic renal failure especially in their teens. Olivia now has regular check ups.
At the age of ten Olivia developed Scoliosis, curvature of the spine which has progressed to a 90 degree bend. She has been offered surgery but Sharon has decided not to pursue this option.
The majority of WAGR sufferers also have severe learning difficulties which can result in tantrums, rages and challenging behaviour. “Olivia has such episodes but most of the time she is a bubbly, fun loving young woman with an amazing sense of humour,” said Sharon. She attends Ravenscliffe High School and Sports College in Halifax where she has developed a skill for singing and loves to play music. She has performed on stage at the Live Heath music festival in Greetland with the school band.
When Olivia leaves Ravenscliffe aged 19 she may be moving to Henshaws College for the blind in Harrogate where they will meet her needs and encourage her to gain independence skills over the three years. At present Olivia works one morning a week at Eureka in Halifax.
Sharon would like to hear from others involved with WAGR Syndrome or know more about the condition.