Boy with rare, incurable disease asks for cards for birthday
UNION CITY, Tenn.—One West Tennessee boy with an extremely rare disease has a birthday coming up Saturday, and his community is coming together to brighten his special day.
Bentley Betts is turning 6 on July 2, but life for Bentley has been anything but normal. He is fighting Batten disease, a neurological progressive disease that causes his brain to forget how to do things like walking or talking.
“It’s a neurological disorder that controls everything, you know just like his vision and his talking and his walking his legs still work, his brain just can’t tell him to walk,” his dad Barrett said.
It is commonly known as Batten disease, and Bentley is one of three children in the world diagnosed with his specific mutation.
“His brain slowly stops working, and that’s why it didn’t show up until he was about two and a half years old,” his dad said.
In December 2014 and after hundreds of tests, Bentley was diagnosed with the NCL8 form of Batten; and what is even more heartbreaking, there is no cure.
“A month later he quit walking and talking, pretty much the same week, and he has regressed quite a bit since,” his mom Laura said.
Since Bentley’s birthday is right around the corner, his aunt wanted to make things as special as possible.
“This year we have tried racking our brain to figure out what we can get Bentley, and there’s just not much that he can do,” Laura said. “She said, ‘Well what is one thing that if someone could give Bentley, what would you want that to be?’ and I said ‘just cards.”
Bentley’s aunt took to social media, asking anyone and everyone to send a birthday wish Bentley’s way.
“We don’t want Battens to define Bentley, we want people to remember Bentley from now, until 10, 15 years from now, the happy little boy that he has always been,” Laura said.
If you would like to send Bentley a birthday card, or any kind of note, you can mail them to:
Bravery for Bentley
P.O. Box 504
Union City, TN 38281
Feel free to send him a card in the mail!
To follow his story you can like his Facebook page, Bravery for Bentley.
