Monique Hebert-Bublyk’s son Evan passed away due to complications from neurofibromatosis. Monique continues to fight for a cure in his honor, and for all the other families living with NF. In August, Monique will compete with the NF Endurance Team in Tough Mudder, a team-oriented obstacle course designed to test teamwork, physical strength, and mental grit.
Here, Monique remembers Evan and reminds us of what it means to be a fighter:
Evan was an intelligent, inquisitive old soul. He loved reading about the Greek and Roman gods and longed to travel to Greece to see the ruins. We weren’t able to take him to Greece, but we did take him to Rome to see the Colosseum. It was the best day of all our lives. Evan’s favorite pastime was reading books written by Rick Riordan, who was his favorite author, and playing video games, especially Minecraft.
Even though Evan couldn’t play sports, he loved them. His favorite teams where the Atlanta Falcons, the Washington Nationals, and the Buffalo Sabres. Evan had big ambitions! He wanted to be a doctor so he could help others kids with NF. He also wanted to be a chef, but decided he would do that on the side for fun. Evan was the smartest person I have ever known. He excelled at everything that NF would allow him to do. Because of his tumor growth, he couldn’t play the sports he loved, but he still loved watching them with his dad.
Evan loved music, especially pop music. His favorite bands were Maroon 5, Kelly Clarkson and One Direction. Luckily, Evan and I got to attend all of those performances together.
My son Evan was an amazing artist. He was always creating the most interesting characters. I was lucky to have Evan in my life. He taught me so much as a mother and a person. There is so much more I wanted to do for him, so much more I wanted him to see, but we only had 13 years and 10 days with him in our lives. NF took so much from him; he could have done so much, and accomplished so much. He’s missed every minute of every day.
I was looking for something to do for Evan, or in Evan’s memory. When I saw that through CTF I could compete in the Tough Mudder, I knew that this was what I wanted to do. I am trying to raise $1,127 because 11/27 was Evan’s birthday. Challenging myself and focusing on fundraising and preparing for the Tough Mudder will help me have something to work toward. Anytime I sit for too long, I’m on the verge of tears, so I know this will help me through the grieving process. Plus, I get to say I completed in the Tough Mudder! That’s pretty impressive, I think.
What will be your favorite part of the event?
I think fundraising for such an awesome cause will be my favorite part. I can’t think of anything better than raising funds that could potentially lead to an end to NF.
What keeps you going during the toughest moments?
When I lack motivation or I’m having a difficult moment, I think of Evan and everything he fought through. His tumors caused him constant pain. He always hurt. So I figure I can hurt and push through, because he did.
What will be your favorite part of the event?
Being able to do all of the obstacles. I am working hard to prepare, and each time I finish an obstacle, I’ll know I did it for Evan.
What is preparation and training like?
Hard and rewarding at the same time!! I try to keep my eye on the prize. When I feel too tired or when I just don’t feel like doing it, I push through it because I know the challenge I face and I will not let myself fail. If I fail to train and prep, I will fail Evan.
How does it feel knowing you are raising money for CTF and NF research?
I can’t think of a better cause. Every dollar I raise is a dollar closer to the end of NF.I don’t want any other parents to have to lose their child. There’s no pain like it and our pain has yet to dull.
What is your favorite song to train to?
Footloose by Kenny Loggins, but when I train at home, I use Evan’s iPod with all his songs.
Anything else you want to mention?
I’m just happy to have this opportunity. I want to do this for Evan and all the other NF kids that suffer and have to miss out because their disorder limits them. Someday we will have a cure and I want to be able to tell people, “I helped do that.”
For information on joining the NF Endurance team and a list of upcoming events, please visit www.nfendurance.org.
