Aisling was born in Ireland in January 2014. After a relatively unremarkable pregnancy from birth it became apparent that something wasn’t quite right.
She spent her first two weeks in the neonatal unit of the maternity hospital where she underwent various tests and assessments. While everything came back clear doctors still felt that there was something up so blood was taken and sent for genetic testing.
At three weeks old the results were back and WAGR was diagnosed. None of the doctors had ever come across this syndrome before so the picture that was painted for us was very bleak.. She would be blind.. She would be obese.. She would have learning difficulties.. developmental delay.. She would never have children.. She was at such high risk of a childhood kidney cancer she would have to be checked every three months for the next eight years after that she was at risk of developing chronic kidney disease and would need to be monitored .. The list went on and on and just seemed endless, for more information we were told to try Google. Needless to say we left terrified.
Weeks later when the courage was finally plucked up to type WAGR into a search engine is when we came across the IWSA website and reached out. Finally that cloud that was hanging around us began to lift as we were introduced to much brighter future. We came into contact with the most wonderful group of people who soon became our extended family.. The WAGR world is a small one but guess what, our kids are AMAZING!!
At just 18 months old Aisling has underwent three separate eye surgeries for cataracts and to clear the lenses. She has also been hospitalised four times due to bronchiolitis and spent her first Christmas in hospital with pneumonia!! But NOTHING gets her down, she just keeps on smiling and her smile is infectious.
She has the ability to wrap everyone she meets around her little finger. She is mischievous, bubbly, determined and head strong and one of the happiest little girls I know (not to mention the toughest) and we wouldn’t change her for the world!!
Yes it can be overwhelming at times and trying to juggle the various specialists and therapies can be exhausting but it just makes every little milestone and every little achievement taste that little bit sweeter.