KIDS WITH COURAGE: Benson Sanford

ROCHESTER, Minn. (KTTC) – KTTC is honored to introduce viewers monthly to some of the youngest among us, facing the unthinkable with bravery and optimism. In our 31st “Kids With Courage” segment, Caitlin Alexander introduces us to 11-month-old Benson Sanford.

Benson is adventurous. We met him as he explored his living room in Lake City.

“Anything new, he’s into,” explained Benson’s dad, Brandon Sanford.

The trouble is--how Benson is doing can change at any moment.

“You guys could leave, and he could have a seizure,” Benson’s mom, Brooke Swenson, said.

Benson has Dravet Syndrome, a rare form of epilepsy that his care team says starts early in life and involves developmental delays as patients grow.

“It presents with prolonged seizure, and the seizure is often associated with fever or following vaccination. And then following this, these babies continue to have recurrent seizures that are not well controlled with most medications,” explained Dr. Elaine Wirrell, Chair of Child and Adolescent Neurology at Mayo Clinic.

For Benson, it started with a twitch on one side of his body at four months old.

“One eye would twitch, then it went into his arm and his arm started doing a circular motion, then his legs started to do the same,” said Brandon.

First responders rushed him to Mayo Clinic where doctors began testing.

His second seizure came a month later.

Pediatric Neurology Resident Dr. Judit Perez Ortiz, under the guidance of Dr. Wirrell, delivered the news.

“He was diagnosed with Dravet and they explained to us what Dravet was, and it’s been a scary path,” said Brooke.

Doctors have been working to put together the right cocktail of medications to prevent Benson from seizing.

That is challenging on a few different fronts.

First, many of these medications are new.

Second, babies grow quickly.

“So, we have to keep adjusting the medications and with Dravet, we have to keep trying medications that work better for them,” said Dr. Perez Ortiz.

Benson’s been flown twice to Mayo Clinic for his seizures.

“Monday, February 20th was probably one of the scariest seizures, because it lasted about 4 hours. On and off, like continually going into one, coming out of one, going into one. He got seven main rescue meds,” Brooke recalled.

In addition to his medications, Benson’s family is taking an additional step for his care.

“One of the big things as of now will be to catch the seizures as quick as possible.

Brooke and Brandon started the search for a service dog but found very few organizations would provide one to a child as young as Benson.

Now, through a referral, a trainer has come out of retirement to train the perfect dog: an English Black Lab named Bo.

The hope is Bo can identify when Benson begins to have a seizure and alert his family.

When Benson starts to walk, he can also prevent him from taking big falls.

“You’re able to go run and switch the dishes over if you need to. You’re able to just go run and get a box of Kleenexes if you need to. You don’t have to constantly, 24/7 have an eye on him. You have that little bit of a piece of mind,” said Brooke.

But Bo, his training, and his supplies come with a big price tag of about $22,000.

The Sanford-Swenson family is hoping the community can help bring Bo home for Benson this summer.

On top of it all, there is hope for this little adventurer and others like him.

“The advances that we’ve seen in new treatments and the ongoing research that is really looking at therapies that will really target the underlying genetic abnormality,” said Dr. Wirrell.

Both doctors told KTTC they believe Benson will demonstrate the same courage his parents have shown in moving forward with his diagnosis.

Here is the link to Benson’s family Go-Fund-Me page for his service dog. They said any amount helps them reach their goal.

If you know a Kid With Courage Caitlin should meet, email her at kidswithcourage@kttc.com.

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