“God doesn’t give you more than you can handle.”
Now I’m not a particularly religious man, but for the past week that phrase has been on repeat in my head. It’s not because of anything that’s happened to me. I’m a fortunate man by all accounts. But last week Thursday, I got a phone call at 1:44 p.m. It was a 716 area code, but not a number I had saved (or blocked). I was fairly certain that someone was about to check on my car warranty or my student loan payments.
Pause
To preface this, recently, Trainwreck Sports and 26 Shirts entered into a media partnership, the terms of which I can’t disclose. The cliff notes of it: Trainwreck Sports is going to be spreading the word about all of the difficult, inspirational and necessary work that 26 Shirts does.
When the partnership began I tried to think about how I could best use my skills and knowledge to hold up our end of the bargain. I began thinking back to my video production days, at St. Francis High School and beyond. I remembered an Alumni Spotlight I produced with the help of our mentor Mr. Messore (I say mentor because he was genuinely much more than a high school teacher moderating a club). That Alumni Spotlight was about Dan Gigante, a member of the class of 1991, who started his own “Buy One Give One” t-shirt company called You and Who.
Fast-forward to 2021 and I have another opportunity to promote Dan’s work. I pondered, conceptualized, and came up with Good Neighbors, an interview series with the beneficiaries of 26 Shirts individual campaigns. The beneficiaries are often people and families who have fallen on hard times. I knew the conversations would be difficult, but they’d be worth it. I figured I knew what I was getting myself into.
Unpause
That phone call that I received on Thursday, April 8 at 1:44 p.m. was from Phil VanKoughnet, the father of Sophie VanKoughnet, 26 Shirts’ latest beneficiary. I answered the call, but the audio kept cutting out.
“I can’t hear you,” Phil said.
“How about now?”
“Oh, that’s better.”
“Okay great! So I’m looking to inter…”
“I’m sorry I can’t hear you anymore.”
“Oh really? Maybe I’m connected to Bluetooth by mistake?” (I was in fact connected to bluetooth but the problem persisted even after I figured that out)
This happened for two out of the three minutes we were on the phone. I’m not kidding. But Phil wasn’t frustrated at all. He was just as confused as I was. Somehow we decided that I’d interview them at noon the very next day, even though I’m pretty sure he just guessed at that being what I said. I texted him the next morning to make sure we were on for noon and thankfully he said yes. He said yes even though I forgot to send him a Zoom invitation, but I did email his wife, Stephanie, to ignore the invitation’s 1:00 p.m. end time.
No, I never claimed to be a perfect person. Nobody is.
But Stephanie and Phil… they’re perfect for each other, and despite the hand they’ve been dealt, they’re doing an amazing job raising their children, which brings me to the reason I was interviewing them in the first place. Sophie was born with Pallister-Hall Syndrome, an extremely rare genetic condition that has less than 100 confirmed cases in the world.
Stephanie described the diagnosis as numbing. Phil likened it to being struck by lightning, but they had an inkling that something was wrong before finding out the exact details of Sophie’s condition. Imagine knowing that you were going to be struck by lightning, knowing that a phenomenon with a 1 in 500,000 chance of occurring was going to happen. I’ll be honest. I can’t. I’m shaking typing this, just imagining that, especially because being born with Pallister-Hall is even less likely than coming into contact with a lightning strike. But those two, reliving the moments as they dictated what is likely one of the worst moments of their lives… they were strong. No tears. No wiping their eyes. Phil’s hands were folded and Stephanie fiddled with her gold bracelet, while my eyes were filling up.
They described Sophie as headstrong, brave and happy, three traits that she absolutely inherited from her parents. They said that she inspires them to be strong every day, and I don’t doubt that whatsoever. But from an outside perspective, I truly believe that strength runs in that family.
I know that pictures only capture a moment and not a passing of time, but I’d like to share two photos that really stuck with me while putting this together, and then I’ll let you go.
When they said that they took the kids to the Rochester Museum of Play, it was the first mention of her brother. I asked how he handled the situation. This didn’t make it into the video. A lot of great stuff didn’t make it into the video.
They said that he’s been great, but, as any six and half-year-old might react to having a little sibling with a serious genetic condition, he at first didn’t understand why she was getting so much more attention than him. That’s something that I never thought of. How do you tell your son that his little sibling is going to take up most of mommy and daddy’s time? Being a perfect parent is an impossible task, especially under circumstances like the VanKoughnets’. But these photos are of a brother who loves his sister. I imagine them growing up, him being overprotective when she brings home her first boyfriend. His face just says how much he cares for her.
Stephanie, Phil, you two have done an amazing job raising your children and it shows.
This photo came while they were telling me how they met. How’s this for a love story: they met in grade school when they were six. They went to high school together but rarely talked. They went to college together, took the same Psychology class, and didn’t even know until they reconnected on Facebook nine years ago.
I met my girlfriend in UB’s dining hall and one of the first things she learned about me is that I wanted to steal glassware from the place for my apartment in Elmwood Village.
These two were always in each other’s lives and barely knew it. They were actually made for each other. And through everything they’ve been through together, they still get this happy telling the story of how they met.
These complete strangers that I’ve talked to for a cumulative 21 minutes and some change… I have so much respect for them. These are GOOD people. Before I mentioned that old mantra “God doesn’t give you more than you can handle.” I’m convinced Stephanie and Phil can handle anything that gets put in their way. They’re an inspiration for me as someone who looks forward to becoming a parent someday (very well after I finally move out of my girlfriends’ parents’ basement). These are people who don’t deserve gargantuan medical debt due to a genetic condition they have no control over, and they don’t deserve to have to ask for anyone’s help.
So allow me.
Buffalo, Bills Mafia, and anyone anywhere else reading this, go to the 26 Shirts website and get yourself one of these incredible shirts, or a hoodie if that’s more your style. And in so doing, support my new friends, the VanKoughnets.
Buffalo is The City of Good Neighbors, so let’s live up to the name.
You can also donate directly to the family on GoFundMe.