Fundraiser set in Sterling for toddler with rare disease

STERLING – Little is known about Nicolaides-Baraitser Syndrome. There are fewer than 100 diagnosed NCBRS cases worldwide.

But here’s what Sterling native Sara Christensen and her husband, Drew, know: Their 4-year-old, Aaron, will be on the small side, his brain likely won’t develop beyond that of a toddler, and he will require lifelong care.

Aaron also will be sweet, happy and social.

That’s pretty great news, considering the alternatives.

“To get this diagnosis and know nobody’s dying from it, it was the hugest relief you could ever imagine,” Sara said. “He’s only going to know happiness. He’s not going to know the troubles of this world.”

Aaron is one of the Christensens’ three biological children, and they also have three foster children. The whole gang drove down from Fond du Lac, Wisconsin, to Sara's parents' house in Sterling on Friday morning. They played in the front yard and talked about the June 12 fundraiser at Cochran’s Pub.

Drew smiled and admired his little boy as Aaron pursued his grandparents’ cat, Bear, played ring around the rosie and showed off the latest trick he’s learned: jumping. Even when it’s cold outside, Aaron loves being outdoors, and often opens his mouth as though he’s trying to drink in life.

“He definitely gives me a lot of perspective and makes me appreciate the world through his eyes,” Drew said. “With how fast kids grow up these days, it is kind of nice knowing that he will always be our baby.”

Aaron began seeing a genetics doctor at 5 months, and finally received his diagnosis in January. His parents were on the brink of taking him to Alabama for a $12,000 test when his local doctor re-ran a whole exome sequencing test and found the deleted gene that resulted in the NCBRS.

“I think that I kind of lost this little piece of hope that I had,” Sara admitted. “When you think about autism, they're doing so much research. I kept wondering if maybe it was autism that was causing all this with him. When I found out that it was NCBRS, there are less than 100 cases worldwide. Nobody’s looking into it, really.”

Sara’s prevailing feeling, however, was relief, especially since the family spent 3 months waiting on test results for ethylmalonic encephalopathy, which has a life expectancy of fewer than 10 years.

“He’s going to wake up every day,” Sara said, adding that the oldest person with the NCBRS is 44 years old. “I carried that weight every day, wondering if he was going to be OK.”

She immediately arranged a service dog for Aaron. His white English golden retriever puppy will be born this fall. Sara and Drew were at a crossroads in terms of his bed, trying to decide whether to upgrade from a crib to a big-boy bed. Their patience paid off, as he’ll always need a specialized bed – sort of a giant crib – that costs about $7,000.

Ever since Aaron’s testing began, Sara's mother, Kim Bennett, has been urging her to set up a benefit. The 1999 Sterling High grad knew it had to be in Sterling.

“My dad, Charlie, kind of knows everybody,” she said. “I knew we wouldn’t get the same sort of support in Fond du Lac that we’re getting here. People left and right are coming up big for us. We haven’t been here in so long, and all these people are coming out of the woodwork.”

Cochran’s is donating space for the event, musicians are lining up to play, and local figures such as the Rev. Scott Porter of Abiding Word Church in Sterling are signing up to do time in the dunk tank. When Aurelio’s Bakery offered to donate a tiered “Paw Patrol” cake, the waterworks finally sprung a leak. It’s Aaron’s favorite show, and the benefit will be 4 days before his fifth birthday.

“That’s the only one that’s made me cry … so far,” Sara said. “Probably the smallest-value donation is probably the one that’s made the biggest impact for us.”

Little things, big things, they all have a way of making Sara and Drew both grateful and misty. Their 11-year-old daughter, Madisyn, recently held a gourmet lollipop sale for Aaron. She brought the idea to her counselor and principal without prompting. It brought in more than $400.

“For about the past 2 years, she’s told us, ‘When it’s time, Aaron can come live with me,’” Sara said.

“She’s just awesome,” Drew added.

Madisyn is clearly protective of Aaron. That said, she loves to roughhouse with him, too. He’s hyposensitive, meaning his sense of touch is less than the average 4-year-old’s.

“I like to play-wrestle with him,” Madisyn said. “I throw him on the couch and stuff and tackle him, and he thinks it’s funny.”

Drew used to say "mama" and "dada," but doesn't anymore. He occasionally says something reminiscent of a word, but you'll likely never hear it again. Sara feels guilty sometimes celebrating his little victories, such as when he learned to climb.

“I almost feel bad for the other kids, because it’s so important and it feels more exciting, because you see how hard he worked at it,” she said. “The first year he had bruises, it was so exciting, because it means he’s getting out and doing stuff.”

As the weather warms, Drew and his boy will bask in the warmth of the sun.

“I love taking him outside,” Drew said. “We used to go really long ways in the stroller, but it’s fun to let him walk and follow him. If he gets tired, he’ll make you pick him up.

“But otherwise, it’s fun to just see where he’ll take us.”

THE BENEFIT

A benefit for the Christensen family will run from noon to 8 p.m. June 12 at Cochran’s Pub, 13464 Galt Road in Sterling.

The money raised will help the family provide for 4-year-old Aaron, who will require lifelong care because of his recent diagnosis of Nicolaides-Baraitser Syndrome.

There will be two silent auctions, a live auction, a lottery board raffle (the prize is a cork board full of lottery tickets), face-painting, a bounce house, a dunk tank, music and more.

Several local celebrities, including the Rev. Scott Porter, pastor of Abiding Word Church, will do time in the dunk tank, and “American Idol” contestant Alex Fischbach of Morrison is among musicians who will perform.

The biggest prize will be a 1-week vacation at Casa Cortez in Playa Del Rey, Mexico, which will include weeklong maid and concierge service, limousine service and a personal chef. Aaron’s mom, Sara, who’s organizing the event, said the vacation package is worth $7,000.

Contact Sara at 920-809-4945 or sara.christensen@live.com to learn more.

MORE INFORMATION

To learn more about Nicolaides-Baraitser Syndrome, go to ncbrs.com, or find NCBRS on Facebook.

WANT TO HELP?

Go to gofundme.com/aaronsanswers to donate to the Christensen family at their GoFundMe page.