1. How have you and/or your family been affected by vision loss?

My son Andrew was born with Ocular Albinism and Nystagmus in 2003.  My cousin and second cousin also have this condition.

2. What unique challenges do you/your child have to overcome?

LOTS LOL.  As a mom, it’s hard to understand how he sees things.  He has adapted to life in so many ways that I often forget that he has any vision difficulty.  I have to remind myself that he is more sensitive to light and sun than I am and things that are easy for me, may not be so easy for him (like seeing crumbs on the counter, tying his shoes, and recognizing me or a person in a crowd).  He adapted well during school and refused to use visual aids to get by (no large print for him, he didn’t feel he needed it).  We did struggle with some teachers not understanding that he needed to see things up close during high school however his classmates helped him out and took notes for him when he wasn’t allowed to take screenshots of the board notes that the teachers made (high school years).  Driving was another challenge, but after a few months of practice ( & several professional lessons), he was given his license with nighttime restrictions.  Currently, he’s trying to find a career/profession that he’s passionate about and doesn’t have vision restrictions.  His love is military/law enforcement/fire/paramedics, but those aren’t looking like a profession that he could do with his condition.  It’s a struggle to keep him pushing forward & positive with so many career paths that have closed doors for him due to his vision. 

3. What are your biggest concerns for yourself/your child right now and in the future?

Keeping him positive and moving forward without getting frustrated and giving up.  Finding an employer that is willing to take the time to understand and accommodate some of his limitations has been hard, so he gets discouraged, and it takes a toll on his self-esteem.  He keeps moving forward and is willing to try/learn new things, so he just needs to find his passion for a field that he can do.

4. How have you/your child’s school/social experiences been affected?

Elementary School was great; small classes and amazing teachers made things wonderful for him.  High school was ok, and he adapted where he needed to.  When Covid hit, and digital learning began, it became a struggle being on the computer all day (and our rural area doesn’t have the best internet), and grades took a huge dump for him, as I know they did for many other kids.  Socially, Andrew interacts well with others and we have been truly blessed in our community with some amazing kids that understand his differences and help him when he needs it.

5. What advice would you give to other parents who have a child with a genetic vision disorder?

Honestly, it is HARD, the last thing you ever want to learn is that your child is going to have any impairment that is going to make life any harder than it already is.  RESEARCH & ADVOCATE! You know your child better than anyone and sadly, some people may not take the time to understand this condition and try to say that “they can’t do it”.  Don’t accept that; let your child be your guide; they know what they can do and if they want to try something, let them.  I feel like the best thing is to just give your child every opportunity you can, let them try anything and if it doesn’t work, find something new to try next. Don’t give up; look into and explore everything you can; social media can be a blessing in finding tips, tools, doctors, and people experiencing the same thing.   

6. What are your plans for the future? Where do you see yourself/our child in 20 years?  

That’s a tough question.  I hope my son will find a career that he loves and excels at and that makes him feel good about himself.  Finding that passion is hard, for so many people, so we are just exploring every opportunity we can.  Hoping and praying we can find a way to improve his vision so he can join the military, but if not, we will explore other interests. 

7. Do you believe science will find a cure for genetic vision disorders in our lifetime? What would this cure mean to you and your family? 

Yes!  Science is amazing, and I truly believe that at some point, something will come along to help improve their vision.  Maybe not a cure but at least something to help with this condition so that their limitations are less. 

8. How did you hear of Vision of Children?  

When we got our diagnosis in 2003 (Andrew was 3 months old), I spent hours online looking for answers, information, hope, and anything I could find.  I was blessed to find this organization, and shortly after I emailed them for information, Vivian took the time to call me personally and share her experience with me and answer so many questions.  This organization is such a blessing.  I love following the stories and research, and it gives me hope for the future!