Kian Mullen is 4 years old and suffers from a chromosome disorder known as Foxg1. It is a very rare genetic mutation/deletion of the FoxG1 gene that impacts brain development and function. To date worldwide there are only 322 kids diagnosed and Kian currently is the only child diagnosed in Ireland. This severe neurological condition is characterized by seizures, inability to control body movements, and lack of speech. While the spectrum of abilities is quite broad, many children cannot walk or talk, are tube fed and they struggle to communicate their most basic daily needs.
The future is unknown for Kian, but one thing that we can say is Kian is the happiest boy you could meet and he continues to lights up our lives. For those who know Kian you will know he always has a smile on his face and enjoys life despite his challenges. Myself and Rob as parents are extremely proud of Kian and the efforts he makes, no matter how big or small they are.
To date many organisations/services have helped us with Kians diagnosis and we would love to give back. We have chosen St. Anne’s Children’s Ward in the Mercy Hospital. It was here Kian was diagnosed. The nurses and staff of St Anne’s ward have shown us so much support and kindness through Kians diagnosis and hospital stays. We couldn’t thank them enough.