Our son, Alfie was born on the 22nd of December 2014, and of course we were absolutely over the moon with the new addition to our family. However, within a few days we started to see signs that there was something seriously wrong with Alfie's eyes. Over the next few weeks we saw specialist after specialist until we were eventually given the devastating news that Alfie has a rare condition called Norrie disease and that there was nothing that could be done to help his vision. On top of this we were told there could be further complications down the line, such as hearing loss and developmental delays.
Little Alfie with his big brother Harrison
Norrie disease is a genetic disorder which primarily affects the eye and almost always leads to blindness. In addition to the congenital ocular symptoms, some patients suffer from progressive hearing loss starting mostly in their 2nd decade of life, while another portion may be mentally challenged.
To help raise awareness and much needed funds, this Saturday (8th August) I will be running a marathon (on my tod) around Colchester United's stadium on their first game of the season! The money raised will go towards a special sensory room where Alfie can learn and develop the best he can in a safe, secure environment, it will also go towards research into the disease and to help with Alfie's transport costs to and from London where he is treated for the diseases.
Every single penny donated will go too little Alfie's cause. To make a donation to Alfie's Vision please click here.
By Tom Leggett