Alfie was born on the 22nd of December 2014, we were absolutley over the moon with our new addition to the family, but within a few days we could tell that there was something seriously wrong with his eyes. Over the next few weeks we saw specialist after specialist until we were eventually given the devestating news that Alfie has Norrie disease and that there was nothing that could be done to help his vision, and that there was likely to be further complications down the line, such as hearing loss and developmental delays.
Here is a little information on it;
Norrie disease is a genetic disorder that primarily affects the eye and almost always leads to blindness. In addition to the congenital ocular symptoms, some patients suffer from a progressive hearing loss starting mostly in their 2nd decade of life, while another portion may be mentally challenged.
Patients with Norrie disease may develop cataracts, leukocoria and Glaucoma, along with other developmental issues in the eye, such as shrinking of the globe and the wasting away of the iris. Around 30 to 50% of sufferers will also have developmental delay/mental retardation, psychotic-like features, incoordination of movements or behavioral abnormalities. Most patients are born with normal hearing; however, the onset of hearing loss is very common in early adolescence.
Your incredibly kind donations have already enabled us to get Alfie over to America last December to undergo an essential operation called a vitorectomy which so far has preserved his light perception and kept the eye healthy! We have upped our target figure though as we are told that he may need further procedures and would possibly need to go back to the States without notice for for which we will need to have funds in place.
As well as this, donations will go towards providing Alfie with the care and support that he need as he continues to grow and develop, and specially adapted toys to help him learn and to grow up having as much fun as possible, it will also go towards alfie's transportation costs to london once a month, and will go towards the funding of possible medical advances which he would benefit from in the future.
Every single pound of your kind donation will go to help Alfie.