Sunday night, an 8½-year-old Omaha boy was staying in a familiar place - The Children's Inn. It's the National Institutes of Health's (NIH) version of a Ronald McDonald House in Bethesda, Md. The Children's Inn is the home away from home for kids with major medical issues and their families.
Meet Isaac Barchus, a third-grader at Sunset Hills Elementary in West Omaha. He was checked in at The Children's Inn with his parents, Steve and Kathe, because he has CANDLES syndrome, a disease so rare that it didn't even have a name until the NIH gave it one two years ago.
Here's the kicker. Even though Isaac is very sick, he was extremely animated watching the Green Bay Packers come back to beat the Detroit Lions, his favorite NFL team, 27-20, Sunday night on national television.
A week earlier, thanks to the Nebraska Make a Wish Foundation and an extra boost from Nebraska Athletics, Isaac was treated like royalty during an extended weekend with the Lions and his absolute favorite NFL player, Ndamukong Suh. The Lions lost another heart-breaker at Ford Stadium, 33-30, to the Indianapolis Colts.
Still, Suh and the Lions' organization "spoiled us absolutely rotten", Isaac's dad said. "Ndamukong, his sister and his entire family have been amazing in the outpouring of their support for an 8½-year-old kid, and we know that that one-half year is a really important number for someone in his condition."
Isaac is and always will be "Ndamukong Suh's biggest littlest fan," his dad said.
Isaac Uses an Attitude to Help His Own Fight
Sunday night, as he jumped up and down a few times on his bed at The Children's Inn, Isaac had several opportunities to say: "In your face, Green Bay!"
It's the same confident, proud attitude Isaac uses to exhort Nebraska, his favorite college team, and to fight his rare auto-inflammatory disease. Isaac has been treated at the NIH since he was 19 months old and a year ago, it appeared he would be the first documented person with his disorder to undergo a stem cell or a bone marrow transplant.
The idea was to stabilize Isaac's condition until specific drugs became available to treat it. Then a miracle happened. A drug company executive who had a son the same age as Isaac decided that Isaac could become part of a first-of-its kind trial. The timing was perfect, and Isaac's mom has never felt more blessed. At the same time, she knows how rough the road ahead will be.
"A transplant is now off the table," Steve Barchus said. "It's still a possibility, but not unless the drug trial fails. We were thrilled on Monday when we were informed of a possible development and treatment that might cure Isaac. Unfortunately, this comes at a very slow pace and is about 5 to 10 years off. But there is hope."
The Make a Wish experience has kept that hope on center stage. The Foundation teamed up with the Huskers Athletic Fund group and a donor to orchestrate three days of inspired activity - a Lions' practice on Friday, a tour of Ford Stadium on Saturday and a limo ride to Sunday's game, where the Barchus family joined the Suh family in their suite.
If you don't understand how such an experience can lift the spirits of an 8½-year-old fan, check out the link to the photo gallery above. You'll see an All-Pro with his arm around Isaac, who's wearing his own Suh jersey; Suh engaging in some face-to-face fun before signing an autograph for Isaac; "Little Suh" posing with Big Suh's mom, sister and dad; an appreciative little fan huddling up with four Detroit Lion cheerleaders; a hands-up while Jim Schwartz, the Lions' head coach, kneels down with Isaac in a hallway and uses the same signal; and last, but certainly not least, Isaac getting one of his most memorable hugs from the official Lion mascot. Isaac's ear-to-ear smile can be described in two words: priceless moment.
The Barchus family flew back to Omaha a week ago today so Isaac could join his third-grade classmates and teachers at Sunset Hills. The next morning, Isaac was up at 4 a.m. so he could catch a 6 a.m. flight with his mom to Washington D.C.'s Ronald Reagan Airport.
The family was supposed to be back in Omaha for the weekend, but things don't always go as planned in a drug study. "That's our life in a nutshell," Steve Barchus said, explaining why football is a good diversion for Isaac even though "he wears his football on his sleeve. He lives and dies with the Lions and the Huskers."
The metaphor, of course, is Isaac's own reality show, but somehow, unlike some misguided fans, this positively charged little guy finds ways to rally himself when disappointment is highest. Rooting for his favorite players keeps him focused, grounded and productive because he knows everything doesn't always go the way his heroes want them to go either.
Joining Suh as Isaac's role models are former Huskers and current Lions (defensive end) Kyle Vanden Bosch and (center)Dominic Raiola.
Isaac to Rex and Kenny: 'Beat Georgia!'
Isaac has great passion for Nebraska's Big Ten runner-up team. He follows Rex Burkhead and Kenny Bell closely and keeps tabs on Suh, Vanden Bosch and Raiola. "Isaac says: 'Go Huskers!!! and 'Beat Georgia!!!!'," his dad said, "and he holds his thumb's up when he says it. Nebraska is his one and only college team.
"Everyone says it takes a village to help people who need help," Steve Barchus said. "In Isaac's case, with the doctors and the hospitals and all of the support he's received, I think it takes a whole country."
No wonder the Nebraska strength and conditioning facility bears Suh's name. He is, after all, a decorated pro who tries to help everyone get stronger in every possible way, even when you're young and the odds are stacked against you.
had originally received word from both Derek Freeman (Huskers Athletic Fund) and a few other friends about Isaac. He
sent me the brief description on Isaac and also a few little ideas he had in
mind to do. Following up, we spoke with the folks at Make a Wish and finalized a few details. Isaac didn't seem to want
much in Ndamukong's eyes, other than just to meet him and say hey! Ndamukong
decided that he could do Isaac one better. He knew Isaac would be able to come
to practice then get tickets to the game but that wasn't enough in his eyes. Ndamukong
made sure the whole family got “SUH KNOWS" tee-shirts, and when Friday’s practice
was over, he met them and introduced Isaac to the other former Huskers (Dominic and Kyle), then asked Isaac if
he and his family would sit in his personal game day suite where they could
enjoy a 50-yard line view and all the food/drinks/desserts they could stomach.
It was a fun experience for all of us. Isaac also had the opportunity to meet a
few of Ndamukong's other guests, Miguel Cabrera, an MLB star for the Tigers,
Jordyn Weiber, an Olympic gold medalist and other Olympians, plus the Detroit
Spirit Girls! Ndamukong is passionate about his SUHSQUAD and especially for those
fans who can appreciate a little extra, he is always willing to give. Thank you
for your efforts in shining light on some of Ndamukong’s work, even though he’s
never been a big fan of doing things for media attention. Ngum Suh (Ndamukong’s sister), Detroit, Michigan