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BSJ Members: Our Marathon challenge is nothing compared to what our brave children face

Thousands of runners will take part in the 122nd Boston Marathon on Monday morning. Some are running to prove something to themselves. Some are giving of themselves to help others. Some have very personal reasons for challenging themselves.

We asked if any members wanted to share their story about why they are running. The two responses we received ... well, we'll put it this way: if you were only going to read one BSJ story ever, we hope it's this one.



[caption id="attachment_411599" align="aligncenter" width="800"] (Courtesy of The Feeney Family)[/caption]

Shawn Feeney
BSJ member since Aug. 8, 2017

Why am I running the 2018 Boston Marathon? That’s easy: my son Ryan. Or, as he is affectionately known to many, “RYNO.” I recently turned 40, and knew the time was now to give this Boston Marathon a go. This will be my first (and only) Marathon.

My son was born with a genetic disorder called neurofibromatosis (trying spelling that, Bedard) that we discovered when he was 4 months old. NF is a genetic disorder that causes tumors to grow on the nerves of your body ... there is NO CURE for NF. NF can cause blindness, cancer, hearing loss, disfigurement, and amputation.

My son was born with tibia dysplasia due to NF and, when he was 16 months, we made the decision to amputate his right leg below the knee. Ryan will turn 8 next month, and has been an amputee who wears a prosthetic leg for almost seven years. He is also dealing with an optic glioma tumor which has caused significant vision loss. He has been treated at Dana Farber for the past two years to help shrink the tumor.

Ryan is THE MAN. He is the most energetic, happy-going, and fun-loving kid you will ever meet. Sure, I’m biased being his Dad, but he truly is one-of-a-kind kid who makes everything, everyone, and every moment special. Nothing will hold RYNO back. I have a strong feeling someday RYNO will run this own marathon.

I am running Boston and raising awareness (and money, I mean come on now) for a local non-profit that we are deeply involved with called Neurofibromatosis Northeast, Inc. NF Northeast is a Burlington-based non-profit whose mission is all about helping people battling NF and raising more awareness for a very unique genetic disorder.

One interesting side note (try not to laugh): When I was a kid, my dad owned a hot dog stand, "Feeney's Weeney's." We used to set up shop right at the start of Heartbreak Hill across from Brae Burn Country Club. We did this for about five years, and I used to love seeing all the runners coming around the corner onto Comm Ave getting ready to tackle the Newton Hills, while smelling the sweet smell of Feeney's Weeney's.

Oh, and Ryan has a little connection with a certain tight end...

THANK YOU for telling my story.




Matthew and Derrah Gousie
BSJ Members since Day 1

The reason I'm running the marathon is very simple ... to show the world that my daughter, Cecelia, has NO LIMITS.

Last year, I ran the marathon on my own and carried Cecelia across the finish line. This year, I am running with my wife, and Cecelia will be walking across the finish line on her own. My daughter is 2 years old and will have crossed the finish line of the Boston Marathon twice. What limits again?

No limits ... that's what we preach to our daughter and what we hope to show at the 2018 Boston Marathon. Last year, Cecelia was carried across the finish line and the goal this year is for her to walk across on her own. For the past two years, Cecelia has lit up our world with smiles, laughs, milestones, little victories, and a determined effort to do things that don't come easy to her. As her parents, it is simply not possible to be anything other than immensely proud of her.

In August of 2017, Cecelia underwent open-heart surgery and displayed her usual grit and determination. The days soon after her surgery proved to be long, but each day Cecelia grew stronger and surprised us all. After having her surgery on a Monday, she was back home on Friday showing us all that there was nothing that would slow her down.

We look at running as the challenge that we face to honor her hard work, perseverance, and strength. Running does not come easy to us, but hard work and determination does.

This year we celebrate all of the little victories no matter how big or small, with every step we take on the marathon course. With every training run we endure, it is the NO LIMITS attitude that keeps us strong. It is knowing that together, the three of us are at our strongest and that is why we do it all together, as a family. Today, as we write this, Cecelia is currently walking both with and without assistance for short distances.

We will all win in this race and we will all walk across that finish line together. Hand in hand.

To contribute to the Gousies efforts, check out their fundraising page.