While battling a rare disease, Grayson Naff teaches life lessons to everyone
El Sombrero free Thanksgiving meal returns despite challenges. (photo by Carla Ungerecht)
A few months ago, you could find eight-year-old, Grayson Naff, serving the Tipp City community by performing the duties of police chief for the day. Grayson spread his smile as he spent a day with Tipp City Police, Fire & EMS, as well as the varsity football team. While the staff all thought they were setting up a special day for Grayson, it turned out that he was the one who made their day. The second grader at Broadway Elementary school has a contagious zest for life.
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“We received news that would shake our entire lives - what we thought was a vision diagnosis that Grayson could learn to live with turned into an ultra-rare fatal, inherited disease called CLN3 Batten Disease,” Grayson’s mother, Emily shared. In May, the family made Grayson’s diagnosis public and have been held together by the Tipp City community, which they call home. Not wanting to ask for help, they haven’t had to. The tight-knit hometown has met Grayson and his family with an abundance of love and support.
When reaching out to Emily, she assured me they didn’t want to publicize the situation, but with so many asking how the little “police chief” was doing, we wanted to follow up. Emily shared with hope that while CLN3 has no current cure, experimental drugs do help suppress symptoms. Currently, the family sees a neurologist in Houston, TX, an ophthalmologist in Iowa, and a plethora of specialists in Columbus and surrounding areas.
While Grayson travels to seek the medical attention to best fit his needs, he is receiving a special kind of treatment right here in his hometown. A few school buddies have made it their daily duty to greet Grayson, holding hands and walking into the school building each morning. He is met with a list of specialists that provide the best education and care possible. Emily expressed a heartfelt “thank you” to the teachers and staff at Broadway Elementary for the superb schooling Grayson receives. He spends time with visual and mobility specialists, as well as physical, speech, and occupational therapists. The family felt a weight lifted when the school district came around them to meet them in the middle of this unexpected curve ball. “Mrs. Martin, Grayson’s current second-grade teacher, and all of the teachers have just been wonderful.”
Before the school year started, the family made as much time as possible to spend quality time together making memories. Over the summer, Grayson’s family made each moment count. “We spent a week in Panama City Beach, where we swam with dolphins. We spent a night in a treehouse. We celebrated his eighth birthday. He was a pilot for the day at Rickenbacker Air National Guard. We went to the Strawberry Festival, swimming at the Tipp City pool, Kings Island, and we also took our trip to Texas to see a neurologist.”
When I asked Emily how Grayson’s treatment was going, she replied with positive words we could all cling to. “We are in the ‘here and now,’ and the ‘now’ is really good.” Living for the moment is all we are promised. Grayson is teaching life lessons to everyone he encounters. His gentle soul is vibrant and radiates positivity.
You can often find Grayson playing with his best bud, two-year-old little brother. They love to jump on the trampoline and play on the iPad. “CLN3 Batten Disease is first led with total blindness (Grayson's vision is currently around 20/200) then behavioral changes, seizures, declining speech and motor skills, and near the end, wheelchair-bound. These words are hard to type, they seem unbelievable. With a life expectancy of late teens or early 20’s, Grayson’s life is on a countdown.”
Just last week, Grayson joined Cub Scouts. He is looking forward to being a part of the pack and learning new skills. Grayson’s family says that they are so grateful for all of the loving opportunities that Tipp City has offered their son. It’s not easy to talk about Grayson’s disease, but through sharing his story, his life, as well as others lives have the possibility of a brighter tomorrow.
“There is currently no cure for CLN3 Batten Disease, but there are doctors, scientists and researchers who are working tirelessly to find an answer to treat/cure our children. There is still time. That is why we are going out of our comfort zone to ask our family, friends, community, and maybe even strangers to donate to help Grayson get into the best doctors, clinics, and medication. Currently, there is an off-label drug (used for a different disease) that shows promise of slowing down the progression of this disease (it's in a clinical trial right now) but it’s very expensive.”
This Thanksgiving, give thanks for your circumstances. Even in the valleys, there is hope. If you want to support Grayson and his family as they navigate the long list of expenses, including treatment and travel, please visit the links provided. Grayson’s family added a note and we ask that you respect the family’s choices.
“Please make sure when talking to kids about Grayson’s condition that they don’t know all facts, for right now Grayson understands that everyone is loving and caring for him because of his vision loss, we have not used the disease name, simply vision loss. We’d like to keep it like that, there’s no need to add any more stress to Grayson. This is very important. Instead of talking about it with Grayson, when you see him, give him an extra high five or hug.”
For more information or how to help the Naff’s, check out the following websites: