I never had been even remotely interested in competing in an organized race of any kind before 2019. I was 43 at the time. 

At that point, we were six years into our journey with Sturge Weber Syndrome and the devastating symptoms of Epilepsy that he suffered as a result of his rare disease. (More on Silas Story below) 

That year I was inspired to run the seven-mile Falmouth Road Race in Cape Cod to help an incredible group of Sturge-Weber parents and supporters surpass their goal of $1mm raised in ten years of doing the race. 

It was a grueling 7 miles but it felt incredible to finish and even better to have raised thousands of dollars from my generous network of friends, family, and even complete strangers! 

But I hate running. I mean I haaaaaate running. 

When I learned that Triathlon only required a six-mile run I got curious. I loved swimming. And biking couldn't be that bad (spoiler alert: yes it can.) 

So with a couple of good friends, I competed in my first ever Triathlon in 2021 in Wisconsin at age 45. 

In 2022, I will compete in the Chicago Triathlon for the first time to raise funds for the amazing work being done by CURE.

I'm racing for my son who has endured so much hardship in his ten short years. Yet he continues to radiate love and joy every day of his life. Despite his challenges, he is the sweetest, kindest, and most beautiful soul you'll ever meet.

I"m racing for the 1 in 26 people in the US who suffer the often unexplained and devastating effects of seizures and epilepsy. 

I'm racing for the parents and loved ones of those epilepsy patients who have shared the experience of a trap door opening suddenly and unexpectedly beneath their feet. Those whose lives can be so traumatically disrupted and who have felt completely helpless while their children and loved ones suffer.

I'm running for myself. To keep pushing outside my comfort zone and see what I'm capable of. I like to say at 46 I'm still on the way up!  To keep challenging myself and setting an example for my three kids of what the reward of being disciplined and determined looks like.

I'm racing to help fund the cutting-edge patient-centered brain research that holds the promise of ending the suffering that millions of people and their families endure from epilepsy.  

Silas turned ten this summer and his strength, amazing outlook on the world, and approach to life inspire me every day. This silly little race pales in comparison to the challenges he has already faced in his life.

Thank you for considering being a part of our journey!

-Kris 

SIlas' Story

Sturge-Weber Syndrome affects roughly 1 in 50,000 so chances are pretty good you’ve never heard of it before. I certainly hadn’t until our son Silas had his first bout with seizures at ten months old and was officially diagnosed on May 8, 2013.

Chances are much better that you’ve heard of epilepsy, which causes seizures, and is the major symptom of Silas’ condition. Epilepsy actually affects 1-26 people so the odds are you know someone or have met someone who has dealt with this in some personal capacity. 

If you have, or know someone who has, you know what a cruel and devastating condition it can be.

What’s crazy is that over half the people who have epilepsy have no idea what causes it. We know more about the vast recesses of the universe then what’s happening between our ears.

So in that sense, we are fortunate. We know why his seizures happen. 

Sturge Weber Syndrome causes blood vessels, capillaries primarily, to not form properly and can affect the skin, the eye, and the brain. It can be like three terrible conditions in one. 

The skin involvement causes a Port WIne stain, a deep purple birthmark that can cover a small or very large part of someone’s face, neck and body. This can be a nightmare for kids socially. Fortunately Silas only has a very faint splash of a pinkish birthmark on his forehead. 

When the eye is involved, which mercifully Silas’ is not, it causes Glaucoma, a painful and lifelong battle that often results in the loss of vision in the affected eye. 

The brain is the real wild card. It can be completely devastating if the parts of your brain that control everyday functions are impacted. Many kids have brain involvement that eliminates any chance of them ever living a “normal” life. 

Silas has had five episodes of seizures in his life. The worst was when he missed his first month of kindergarten and we were in the hospital and PICU for three weeks. We will live the rest of our lives with PTSD from this time period. 

We also endured a six-week period in 2nd grade where a new type of "drop" seizure started causing him to have dozens of quick, short circuiting-like seizures that were often powerful enough to knock him off his feet and caused him to wear a helmet to protect his head. 

While dealing with seizures sucks as hard as anything in life can suck, we have been spared the worst of Sturge-Weber. We know many families who are dealing with all three issues and it rules their lives. 

On balance, we count ourselves incredibly lucky. Silas has taken seizure meds twice a day since he was ten months old and they’ve worked miraculously well. He has a twin sister and has kept up with her in school, life and friends in almost every way. If you meet him, you’d never guess.

The day he was diagnosed in 2013 was momentous for another reason. A miracle breakthrough in Sturge-Weber research was announced the same day. The specific gene mutation that causes SWS had been identified after 25 years of research. Finding this mutation was described to me by the lead doctor a few months later as “finding a needle in a billion haystacks.”  

It was a clear sign to us that we had to play a role in helping to fund the research that could someday develop a cure. So that’s what we’ve been doing for the last nine years. 

Looking at Silas’ brain scans when he was first being diagnosed, a doctor gave us what passed for good news in that the regions of his brain affected weren’t well understood. So that was good news in the sense vital processes for everyday life weren’t going to be impaired. 

Then he randomly suggested “maybe he’ll never develop an appreciation for music.” With everything else swirling and being upended in our lives, this was like a sucker punch. I have a deep love of music forged from bonds with my own dad and suddenly it seemed like that was being robbed by this disease also. 

Turns out that the doctor was dead wrong.  

Silas LOVES music. Any concerns I had from that doctor disappeared when at age 2 he became obsessed with The Beatles and Yellow Submarine. The kid has been rocking out ever since. 

So we started a fundraiser called Rock for a Cure that featured kids singing Karaoke. It started at the Rock House where our family used to love going on Friday nights when the kids were young. We had four annual events under our belt and were really getting ready to blow it out for the 5th and then the pandemic hit. 

So now, apparently, I'm a triathlete and we raise money this way. 

The number one thing this journey has instilled in me is an unshakeable belief in the idea that “The obstacle is the way.”  That the hardest things that can happen to us in life are both inevitable and also present an opportunity. 

An opportunity to learn more about how deep our strength and resolve can be. Like starting to do triathlons at age 45. An opportunity to grow as a human being. An opportunity that can ultimately make your life richer in ways you never imagined. 

The other gift this adversity has given me is a deep appreciation for the present moment. Any day I’m not in a hospital with my son is an amazing day, no matter how routine. I’ve learned not to take any of this big, beautiful, messy, and often mundane life for granted. 

Tomorrow is never promised to Silas to be one without the complications of his condition. The fear of that is never far from our minds. 

But a healthy tomorrow isn't promised to anyone. As anyone who has been on this planet for very long knows, your life can be turned upside down in an instant. We can never know. 

That's what makes every moment with our kids, our family, our friends, and our loved ones precious. It's so easy to forget but so important to remember. 

We'd never have chosen this path but we are grateful for the profound outlook on what really matters in life it has given us. 

Thank you for taking the time to learn more about our journey!