Eamon and Kealan’s Story – the inception of GEnE Warriors
Two of our children, Eamon and Kealan, were born profoundly deaf. This was obviously extremely traumatic and heartbreaking for us but we managed to “fix” their deafness though cochlear implants. Then, in 2018 (when the boys were 5 and 3 respectively), we had genetic testing done and were told that our little boys have Ushers Syndrome type 1D. This means that they are born deaf and will gradually lose their eyesight due to Retinitis Pigmentosa.
After the initial shock of this news, we obviously tried our best to find treatment, engaging with Prof. Chen who is a specialist at the Lion’s Eye Institute. It turns out that there is no known treatment or cure. But we could not just sit back and let nature take its course, sentencing our boys to a future of blindness, so we started looking for research that may be taking place specifically for Usher’s Syndrome.
There has been some related research going on around the world but since this is not one of the big, “popular” diseases there is not too much emphasis on Ushers Syndrome or the related vision and hearing conditions. It further turns out that if we were to try and get research done here in Perth then it would be really useful to have a Stem Cell Robot to do the time-consuming task of preparing experimental samples to free up a researcher to do the real research work.
So, based on our relationship with Lions Eye Institute we decided to initiate fundraising towards a stem cell robot plus ongoing researcher time – to this end we came up with the idea of creating this not-for-profit organisation, and set about doing this formally.
Our Mission is obviously so much bigger than just assisting our boys – there are a number of vision and hearing conditions which would benefit from this research, and we hope to have a positive influence on children’s lives.
Thanks for your interest and support.
Andrew and Bronwyn Doak