7-Year-Old Eclectic Boy Diagnosed with Rare Condition; Community to Host Benefit Program

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(Source: Bentley's Medical Fundraiser)

Residents in Elmore County are coming together to help one 7-year-old boy, get the medical treatments and expertise he needs. 
 
Bentley Dugan of Eclectic has suffered from seizures for two to three years. In October of 2019, Doctors at Children’s Hospital in Birmingham diagnosed him with SCN1B, a brain mutation in the sodium channel, and Brugada Syndrome which means an abnormal heart rhythm and could result in sudden cardiac death. 
 
“Birmingham diagnosed him with type of epilepsy to begin with then we noticed he was having more seizures. His brain was seizing without us knowing it every seven to eight minutes,” explained Bentley’s mom, Ashley Dugan. 
 
Dugan says they noticed a difference in Bentley’s schoolwork which led to more testing. Finally, Bentley was diagnosed with the SCN1B and Brugada Syndrome. 
 
“He has a really bad memory loss, he doesn’t remember a lot of stuff. Physically it has affected him in a lot of ways as far as playing and having a lot of energy,” said Dugan. 
 
Both Diagnosis are pretty rare. So rare that doctors in Birmingham recommended a doctor at the Mayo Children’s Clinic in Minnesota. 

“They did tell us two in the U.S. have been diagnosed. Two right now, are documented,” said Dugan. 

Dugan says the Mayo Center has better resources and more technology for the specific diagnosis. 

“There’s a doctor there and this one of his main experiments,” said Dugan. 

Bentley has 15 appointments and two surgeries set up but there’s just one problem. His current insurance will not transfer to Minnesota.

“His insurance that he has now, which I am enrolling him into a new one, but it still won’t cover us leaving. His first appointment in January 14th. We are going to leave out on the 12th but the insurance won’t cover it and right now his appointments that are set up is $27,017,” said Dugan. 

Thanks to the community and fundraising efforts, the family has raised nearly $6,000. However, they are still far from the goal of $27,000.

“We are selling Team Bentley bracelets, shirts, on January 5th we will have a benefit program,” said Dugan.

Bentley also has a very special companion named Olive who was donated by Clint Lothrop in Auburn.

“He contacted us and everywhere I contacted, it was like $27,000 to $40,000 for a service dog. Clint got with us as soon as he could and told me he wanted to donate everything. It made me cry,” said Dugan. 

Clint Lothrop not only donated Olive but also donated the services of training the dog. Olive has been living with the Dugan family for nearly a month and plays a huge role in keeping Bentley safe and healthy. 

“She is trained, when he has seizures, she will do the down position and hold him to his side so he doesn’t hurt himself. She alerts me. She also can alert when his heart rate is getting low because the Brugada Syndrome is a sudden cardiac death,” explained Dugan.

The benefit program planned for January 5th will be held at the Eclectic Warehouse starting at 4 p.m. Community members and groups have come together to help give items for a raffle, entertainment and more.

“As an important member of our community it’s just so wonderful to give back to her,” said Aubrey Hornsby, the CEO of the Eclectic Warehouse.

Hornsby says the support on Facebook and throughout the community is a beautiful thing. Several in the community have donated their time and services to help make Bentley’s Benefit Program a great success.

“To see Bentley, a fine young man who is suffering and the thought that we can actually contribute to his well-being, to the longevity of his life and do it in such a meaningful way. I mean what a gift,” said Hornsby. 

“They said there’s not a cure but I think one day he will be a walking testimony. He will grow up and be a walking testimony,” said Dugan.

For more information and if you would like to donate CLICK HERE. 

Categories: Montgomery Metro, News, Statewide

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