Grayson’s First Assessment - 8 years old

We saw Dr. Emily de los Reyes at the Batten Disease Clinic at Nationwide Children’s Hospital.

It’s all still very surreal, but real at the same time. We try to live normally and adapt Grayson’s life with his vision loss, but with this disease there’s so much more to it. Staying ahead of the game while praying so dang hard that his future is so beautiful and bright. For right now when we talk to Gray we’ve kept the disease as only vision loss, it’s not as scary that way and we’ll learn to navigate it more in the future with explaining. Thank you all for understanding.

While debating if we needed a second opinion or second neurologist I’m very glad we did. Much love to TX and we’ll still keep seeing Dr. Clark it was also nice to have more eyes on Grayson in Ohio. Dr. Reyes had a very extensive evaluation that will help so much for Gray’s IEP. To have a doctor that says I not only want Grayson to physically get to the door ok at school I want to know someone is there for him as soon as he walks in.

He scored well in his motor and occupational tests, which is great! He scored a little below for memory and cognitive, there are activities we can work with him to try to strengthen those areas. We didn’t touch on vision tests today. She asked that he stays as active as possible and keep his brain thinking! We’ll see her in 6 months to test again and make sure school is going well.

Gene therapy is Dr. Reyes’ hope for the future. She is trying fiercely for it. Dr. Reyes was in charge of the latest gene therapy clinical trial for CLN3, for reasons it was stopped but she KNOWS this disease.

We’re lucky to have a neurologist so close to home.