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Shades Brigade

Greetings:

Here is our story My name is Ashley and i have the most amazing 8 year old son Nathan. Well my son Nathan was born full term and a perfectly healthy baby boy. The first year seemed perfect . But at the age of 18 months we had noticed Nathan had a lazy eye. Right a lazy eye I thought this is an easy fix. So we made the appt and well that is when our life had changed. After one doctors apt. at DuPont I was informed that Nathan had enlarged optic nerves and it had looked like his retinas had never formed. Working in the medical field so many things go thru your head, you begin to think the worse and well you shut down, You never think that it would be your child. You stop listening and begin to thing what and where to go from here. At that moment I knew things would be different and when things all started to click. After many test and appointments we were then recommended to head to wills eye to see a specialist knowing that we had some of the best doctors in the area we headed there. After more testing and appointments we still are on the edge with what exactly is wrong, the worst feeling as a parent is not knowing what is wrong . Genetic testing was one thing everyone seemed so positive about that this would be our answer. I felt like the doctors even believed that genetic testing would be the answer and tell us what is wrong. Well 2 years after we started we learned that we still had no answered and it came back negative. We were at square one again. But Nathan is still the happy go lucky child and you would never know anything was wrong.

As the years have gone on we have been so lucky that Nathan is so verbal and can tell us what's wrong now and what he needs. We were finally given a few diagnoses but we still do not have answers on why this happened or  what will the final outcome be  But we do believe that one day they will find a cure. Nathan has been diagnosed with ocular albinism and enlarged optic nerves also known as ONH along with Retinal macular atrophy, retinal dystrophy, optic nerve hypoplsia, hyperopia and congential anomaly of th optic nerves. Along with these diagnoses he has decreased contrast and depth preception. But as I long to remember this is his normal he knows no different, so he honestly thinks we all see the same way as him.  He does not let this affect his life and lives a happy 8 year old life he plays sports, video games and plays with his friends just like any other child.  I know that I have a very strong little boy who knows no different and who lives every day to the fullest.  Most of you who have encountared Nathan on a daily basis probably wouldn't even notice that something was wrong with him unless who were closely observing him. His positive attitude and wanting to try different things keeps me going in hope that their will be a cure or some kind of treatment for children and adults that are faced with these issues.

In conclusion, we hope you will join our team or donate any little bit will help to hopefully find a cure for some people who are suffering from so many different conditions that are unknown or unfamiliar to so many of us. I know I was one of those people who didn't know anything about so many different eye conditions. I know Nathan will one day look back and appreciate everyone coming together and supporting him. We Can't wait to see you all come together for Nathan and he is going to love having you all walk by his side. The best part he loves his teams name Shades Brigade, thanks to his coaches and teammates from baseball.

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