DARLINGTON — In the first years of his life, Avery Reese could be found acting as a typical 2-year-old in his Darlington home, often giggling and dancing. 

But less than two years later, Reese, now 4, has had 75 seizures. His once sparkling personality has been somewhat muted by necessary medication. 

On Father’s Day in 2017, Avery began having a seizure. It was only later identified by his parents, Sharon and Scott Reese, who realized they had previously seen symptoms of seizures in their youngest son. 

“We went into total shock and terror,” Sharon said. 

Doctors initially told the couple it was possible Avery could eventually grow out of it, and seizures could likely be controlled by medication. But that wasn’t the case as Avery continued to seize, at one point suffering 11 seizures in 24 hours.

It was after seeing several doctors, undergoing numerous medical tests, blood draws and MRIs that Avery was eventually told he had a CAM2KA chromosomal mutation. It is a diagnosis given to less than 20 other people in the world. Of them, Avery is this highest functioning.

“It’s changed our lives and it forever will,” Sharon said. 

Avery also fits into a group of about 25% of people who don’t respond to seizure medication. Sharon said they’ve experienced medications that have worked for a short time, but as time passed, they became ineffective. Sharon said when he tries a new medication, the chances of it working are around 3%. She said if it does work, it’s like a “little miracle.”

Avery also experiences mood changes, irritability and several other negative symptoms from the medicine. 

Sharon and Scott sleep with a baby monitor and check on Avery up to 20 times through the night. In February, Sharon got up on a whim to check on Avery. It was a meaningful moment. He was having a “silent seizure” that could have resulted in brain damage if not medically stopped.

It’s seizures like that one and the chance for a little peace of mind that has the Reese family working toward getting Avery a seizure dog. The dog would not only help alert them when Avery is having a seizure, but would also prevent him from eating something harmful or from wandering off.  

Though Sharon says they’ll probably never stop checking the baby monitor, the seizure dog would potentially help them get some rest and maybe bring some normality to their lives.

Sharon, a special education teacher at Darlington Middle School, and Scott, a loan officer at the First National Bank in Darlington, are never worry-free when it comes to Avery. Even at work.

“We constantly have our phone, waiting for the babysitter to call,” Scott said. 

Going to functions can also be a challenge, because of Avery’s involuntary tendency to yell out. Sharon and Scott said they’re grateful for the kindness and understanding the community has shown to their family.

Even with the quickest option, Avery won’t be able to get a seizure dog until June 2021 due to their high demand. The dogs can cost up to $60,000 to train and the Reese family is responsible for a minimum of $17,000 of that cost. 

The family will eventually travel to Ohio for 12 days for training and to see if the dog is a good fit for Avery. The couple hopes to bring home a companion that can help their son. 

The Reeses are active in Darlington’s Lions and Optimists clubs and feel appreciative of the help they’ve received so far. 

“It’s humbling to have people say, ‘We want to help you,’” Sharon said. 

The community is actively working to raise money for the family by selling puzzle pieces for $10 each. Those who purchase the pieces have their name written on the back. The Reeses will be given a complete puzzle. 

Avery still enjoys interacting with his three older siblings, Melany, 9, Charlie, 8, and Lindsey, 6. Sharon said Avery has redefined what their family thought was “normal.” 

“He’s just taught us that so many things in life we think are important really are not,” Sharon said. “He’s taught us to slow down and look at what matters.”

Donations can be made to the Avery Reese Fund at First National Bank at Darlington, P.O. Box 50, Darlington, WI 53530.