17-year old Seth Donnan breaks down the line huddle before the game against Buffalo on Dec. 9.
ORCHARD PARK, N.Y. – It’s been more than a year since Seth Donnan was able to play the game he’s loved since he was 7 years old.
It’s been more than two years since Donnan was diagnosed with Dense Deposit Disease, a chronic kidney condition that keeps his kidneys from filtering waste out of his blood properly.
Much about the day to day life of the 17-year old human smiling machine has changed in those two years. Much of the life he and his family once knew will never be the same.
But, through the monthly checkups, bi-weekly blood work and all of the other things that go into being diagnosed with a disease so rare that doctors call it one-in-a-million, there’s been one constant that helps Donnan and his family deal with the tribulations of something so life-altering: football, specifically Rams football.
That’s what brought Donnan and his family to St. Louis in September to spend a day at ContinuityX Training Center and attend the following day’s game against Washington.
That’s why they went to see the Rams again in Buffalo for a seemingly random weekend in early December to see his beloved Rams take on the Bills at Ralph Wilson Stadium.
Of course, this was no ordinary football pilgrimage for a fan to go see his team. For Donnan and family, it was a weekend to remember as he visited his favorite player and new pal
It was also a weekend to help them forget, if only for a little while.
“It’s amazing,” Karen Hurst, Donnan’s mother, said. “It’s been a challenging two years for us. When Seth lost football, he lost his world. It’s been his world since he was 7 years old and it’s been really, really hard for not only him but for all of us. To have this experience has just been absolutely amazing. It eases some of that hurt that we go through.”
Now a senior at Hampton Bays High in Long Island, New York, Donnan recalls falling in love with the game when he was in first grade. More specifically, he remembers falling in love with the St. Louis Rams, a team that at the time was at the peak of its powers in the midst of the Greatest Show on Turf.
That Christmas, Donnan received his first Rams jersey emblazoned with a No. 28 and Faulk across the back. He began playing with the Rams on that year’s version of the John Madden video football game and he never looked back.
Every time he played Madden, there was no doubt which team he would use. Want to talk about football? He’s throwing out statistics of Faulk, Kurt Warner, Isaac Bruce and Torry Holt.
“I picked the Rams just to pick the Rams,” Donnan said. “I didn’t know much about football at the time and ever since then I always have been a Rams fan. It’s just always been a big part of my life ever since.”
Donnan’s football playing days certainly weren’t limited to video re-creations of his favorite players. As soon as he was old enough, he dived head first into peewee leagues and was always one of the best players on his team.
Something of a football Swiss Army Knife, Donnan played all over the field, working everywhere from kicker to kick returner, running back to receiver, essentially wherever his coach needed him to play.
By the time he got to high school almost four years ago, Donnan harbored dreams of a college scholarship. He played on the freshman and sophomore teams and was on the verge of his crack at playing for the varsity when it was all taken away.
“I miss it a ton,” Donnan said, wistfully. “I wish I could go out there and play every single day but I understand that I can’t.”
ONE IN A MILLION
As Donnan was about to begin training camp for his sophomore season, he felt sluggish and sick. Thinking that pneumonia was the cause, Donnan and Hurst went to Stony Brook University Medial Center for a checkup.
Donnan went through the gamut of tests, including blood work but it was a urine sample that revealed he had protein levels more than 20 times the amount of a normal person. The doctors followed with a biopsy and determined it was D.D.D. or membranoproliferative glomerulonephritis type II as it’s known in the medical world.
Doctors say that the rare person who gets the disease will almost certainly suffer kidney failure within an eight to 12 year window from the time it’s diagnosed. At that point, a kidney transplant or dialysis become primary options.
Two months ago, Donnan actually found out that his already rare disease is even rarer than initially thought.
“He’s got another compound problem that makes it even more rare so it’s very challenging because you don’t know what to do,” Hurst said. “There are no medications available; the treatment is kind of hit or miss so you just never know. You just take it day by day and learn to appreciate life.”
The disease is not a painful one, according to Donnan who said he wouldn’t even know of its existence if not for the biopsy. He’s also had some surgical work done with a Hickman port installed in his chest to allow for intravenous access and he had a fistula procedure that fused an artery and vein in his left arm to allow easier access for blood plasma to be filtered in and out as needed.
Because it’s so uncommon, though, it can be difficult to find the proper care. Hurst credits the family doctor for providing research to complement the relentless studies she’s done on the disease and she’s even formed a friendship with a specialist in another state that she can call and ask questions whenever the need arises.
Considering all he’s been through, Donnan has remained remarkably upbeat and said he’s doing fine right now.
“Everything right now is going OK,” Donnan said. “I just got blood tests. It looks like it’s coming back but currently I’m OK.”
WISH FOR A WISH
The night of Oct. 6, 2011, Donnan played his final high school football game, making an appearance for the varsity team at Hampton Bays. Before the game, the team was informed of Donnan’s theretofore hidden condition and it was made clear that it would likely be his last game.
Donnan found himself emotional before the game, especially when his team was informed. Everyone in the stadium that night understood when Donnan took a short pass and raced 49 yards for a touchdown in one of those storybook moments you’d almost have to see to believe.
Not being able to play the game has been tough for Donnan, who, according to his mother, as recently as last week was wistfully watching recruiting tapes of one of his teammates trying to land a college offer.
“It was just so hard,” Hurst said. “To see that look on his face, it just hit home that he was on track for a scholarship.”
When the Make-A-Wish Foundation came to Donnan earlier this year, he wanted no part of it. To meet the kid is to know someone who seems legitimately capable of smiling and making the best of any situation, even ones where rare, serious diseases threaten your life.
“Seth didn’t want to make a wish,” Hurst said. “He said his wish was to give another kid a wish.”
Through some encouragement from his family, Donnan relented and agreed to take part in the program. His wish was something of a no-brainer. It was, you guessed it, all about football, Rams football in particular.
Donnan wanted to meet his favorite team and the wheels were set in motion for a visit the weekend of Sept. 16 for this year’s home opener. Traveling with his parents and sister, Donnan watched the team’s Saturday walk through, got the VIP tour of the facility and walked into a locker room with a special locker set up just for him right next to running back
At the end of the walk through, coach Jeff Fisher asked Donnan to break down the team huddle.
Before the trip was over, Donnan got to meet Long and the two instantly hit it off. They talked football, laughed and got to know each other well enough that before parting ways they exchanged e-mail addresses.
“I had just so many emotions: happiness, excitement and I couldn’t fathom everything that was going on at the same time,” Donnan said. “It took me a couple weeks to realize ‘Wow, I just met my favorite NFL players who are on TV.’ It took me a while to let it set in.”
PART OF THE TEAM
Soon after heading home to New York, Donnan and Long began exchanging e-mails on a regular basis. They talked about more than just football with health, family and just about any other topic one can think of also on the table for discussion.
What started as a star struck moment for Donnan has turned into something far more tangible: a real, true friendship.
“It’s a really good friend relationship,” Donnan said. “He e-mails me, I e-mail him. We check up on each other all the time. He’s just a really good friend to me I feel like now.”
Make no mistake, for as much as seeing Long’s name pop up in his inbox still makes Donnan’s face light up, the reverse holds just as true.
“He’s just a really tough kid and his attitude is awesome,” Long said. “It’s always a good reminder to have a great attitude. I take a lot from our relationship and just talking to him and keeping up to speed on what’s going on. He’s a cool kid more than anything and it’s just great to have him around.”
When Donnan told Long of his plans to travel to Buffalo for Sunday’s game, Long made it a point to have him come to the team hotel to hang out on Saturday night. He talked to his buddy and asked him to break down the huddle for the defensive line during pregame warm-ups, a task Donnan accepted though he was nervous he was going to have to deliver some kind of a speech.
Standing in the middle of the massive group, Donnan allowed Long to offer the words before he broke it down and came out looking like he was ready to take on the Bills himself and predicting another Rams victory.
“It was intense,” Donnan said. “You could feel the toughness and how ready they were. They are going to win. They are going to play hard throughout the whole game.”
Moments after Donnan’s forecast proved correct in a rousing come from behind win by his favorite team, he found himself joining Long in the locker room where he got to congratulate his favorite team.
Long introduced Donnan to owner Stan Kroenke and quarterback
“It means a lot (to have him here),” Long said. “More than anything, win or lose, that Seth was able to come out and make the game, he’s such a great kid and has such a positive attitude, so tough and his family is really nice. For them to make the trip across the state and then for us to win and him to get to meet everybody he got to meet, it’s pretty cool. He’ll have something to tell everybody at school about.”
As difficult as it’s been for Donnan to not have the opportunity to play the game he loves anymore, he’s found the next best thing.
“Now I kind of like to live through Chris and these guys,” Donnan said. “It makes you feel like you’re still a part of the team.”