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CoSIDA Goodwill & Wellness Committee
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Communicators Outside the Lines Feature Series
This is the next profile Q and A in a series entitled
Communicators Outside the Lines: Better Yourself, Better Your Community produced by the CoSIDA Goodwill & Wellness Committee. Read past profiles at
CoSIDA.com/CommunicatorsOTL.
HAVE IDEAS OR MEMBERS TO NOMINATE FOR THIS SERIES?
If you have any ideas for this series, which will revolve around CoSIDA member volunteerism and health and wellness, please contact Goodwill and Wellness Committee chair
Chris Mitchell, Washington University in St. Louis Assistant AD for Communications, at (618) 560-9280 or
mitchell@wustl.edu.
Matt and Deborah McCollester
Q&A with Matt McCollester
Assistant AD for Strategic Communications, UNC Greensboro
by Chris Mitchell, Assistant AD for Communications, Washington University in St. Louis
CoSIDA Goodwill & Wellness Committee Chair
UNC Greensboro Assistant AD for Strategic Communications
Matt McCollester completed the Make-A-Wish Trailblaze Challenge on Oct. 14 at Nantahala National Forest in Macon County, N.C. McCollester hiked 28.3 miles and raised over $4,000 in honor of his seven-year old son Evan and his battles in 2017.
McCollester, who is in his sixth year at UNCG, is the main contact for men's basketball, men's soccer and men's and women's golf.
McCollester’s son Evan was diagnosed with a rare genetic metabolic disease in 2017. This is an inherited disorder in which the body is unable to process certain protein building blocks (amino acids) properly. Evan’s disease affects an estimated 1 in 300,000 infants worldwide.
Evan spent six weeks in the hospital and recovering in 2017, with McCollester by his side the entire time. Matt and his wife Deborah are also parents to 18-month old Madelyn.
“Evan is a very strong kid, but it been a hard adjustment for him,” said McCollester.
Below McCollester shares his thoughts following the hike and an update on Evan.
Q. What made you want to hike the 28.3 miles in his honor?
McCOLLESTER: 2017 was a very challenging year for our family. We had a seemingly healthy six-year old boy on our hands until mid-March. Evan came down with the flu and we didn’t think anything extra about it — he has the flu and it has to run its course. After the third day of really struggling, we took Evan to Brenner Children’s Hospital in Winston-Salem for what we assumed would be a quick emergency room visit to get fluids and get him feeling well.
That is how the ER visit started with just fluids but after four hours of not getting better, he started to deteriorate quickly. By nighttime, he was unresponsive and in a coma suffering for encephalitis (swelling of the brain and spine). Little did we know earlier in the day that our world would be turned upside down and we would be watching our six-year old fighting for his life. It was a parents’ worse nightmare. Seeing your child helpless and in a coma in the pediatric ICU was a humbling experience. We didn’t know what was causing his encephalitis but we had some amazing doctors at Brenner working hard to figure it all out. We ran lots of tests from EKG, to MRI and even a spinal tap. It was a trying time for our family for sure. At one point during it all, they told me to brace for the worst-case scenario that our little guy would not make it out of the hospital and a catastrophic outcome was possible.
Amazingly, shortly after our lowest point of those dark projections, Evan started to rebound. Hours after they told me it was catastrophic, he opened his eyes for a few seconds and said “Daddy!” That moment of strength from our six-year old gave me all of the strength I needed to fight for him. Evan was in the fight of his life and I needed to be there to support him. No longer could we spend our time crying and asking why, we had to spend it with positive and encouraging words for him to battle harder. All of our prayers and the prayers of friends, co-workers, colleagues and complete strangers I know made a difference. Evan was able to pull out of the coma and pull through. He had work to do with rehabilitation but his strength and fight was an impressive feat.
I was inspired by the heart and fight of my six-year old son and all of the out-pouring of support we received as a family. After he was released from the hospital, I wanted to pay that love and support forward while honoring Evan’s fighting spirit. I saw a billboard for the Make-A-Wish Trailblaze Challenge and I knew this was something I wanted to accomplish. I wanted to show Evan how proud I was of him for being strong and fighting, so I dedicated my hike for him. The Make-A-Wish Foundation does some amazing work. We were in the hospital a lot this year, but I know those who get wishes granted had it even harder than our family. I wanted to help those families have something good happen in their tough times.
Q. What was the biggest challenge you faced during the hike?
McCOLLESTER: Hiking 28.3 miles through the mountains in one day is a big challenge. This is not something you can do on a whim so you have to train for the hikes. I spent time on the weekends leading up to the big hike on practice hikes to increase my stamina and get my body ready for the big day. My wife, Deborah, was a big help during this challenge as I took many Sunday mornings away from the family to train and we all know our jobs already take time away from home.
On the day of the big hike, it was perfect weather and you start your hike at 4 a.m. so you can finish before sunset. It takes people anywhere between 10-17 hours to complete the hike. I did it in a little over 12 hours, which was better than my goal of under 14 hours. The first thing is 28.3 miles is LONG! I knew that going in but it definitely was a challenge. The Make-A-Wish crew have a great set up though, with four aid stations throughout the hike to break it up, provide food, water and first aid if needed (blisters first and foremost). Being able to tackle one portion of the hike at a time instead of the entire 28.3 miles was helpful.
There was a point around mile 18 where I started to have a lot of knee pain. Miles 18-20 were really hard and I didn’t know if I would be able to make it all the way through. I kept thinking of Evan during his fight and I had pictures of him on my shirt that motivated me to push through. Once I was able to work out the pain (and pop some ibuprofen), I got my second wind and powered through to the end. It was an amazing experience.
Q. What kind of lifestyle changes has your family incurred?
McCOLLESTER: Evan’s condition is one where his body basically can’t filter protein so we have a big diet change for him and our family. He is basically going to be a vegan and it is a work in progress. Getting a six-year old who is a picky eater to start with, eating more vegetables and less meat is a challenge. Evan is battling through it and with time I am sure it will get easier. At this point we are limiting his protein intake and he is only eating a few different things each day. Our hope is, as he gets older, he can add more things to his diet as his taste buds grow and he adds more vegetable and fruit options.
Evan still needs protein to grow and develop, both physically and mentally. We are trying different “formulas” with genetically modified proteins that his body can filter and use. This is a process as well as a lot of these aren’t the best tasting, but we have found one that he tolerates and are working on drinking more and more of it each day.
Also, Evan’s condition worsens when he is sick so keeping a seven-year old active boy healthy is a challenge. When he gets the flu, stomach bug, bad cold, etc., we have to be very vigilant to check his levels and keep a close watch on him. We have an emergency action plan in those times of sickness that we have to execute by going to the emergency room and making sure his doctors follow specific steps to keep him from deteriorating like he did last spring. Being vigilant with any sickness is a big change for us but his plan has worked so far this winter and we just take it as our new normal. Evan is getting very comfortable with hospital visits and is stronger each time he goes. We had to visit the ER on Christmas Day and this time was the first time he hasn’t fought the IV experience. We were very proud of his toughness he showed getting his IV and staying positive.
Q. What is Evan’s long-term prognosis?
McCOLLESTER: Evan’s long-term prognosis is good. As long as we are vigilant with his diet and are still getting other proteins into his system, he will continue to grow and thrive like a normal seven-year old. We have to be vigilant in times of sickness too, making sure he doesn’t slide downward quickly when he is in stress. As long as we know what to do and what to look for, he will continue to do well.
Q. Has Evan’s disorder changed your outlook on life?
McCOLLESTER: This has been a life-changing year for sure. I never thought I would have to think about losing one of my children so early in life. Seeing Evan fight through this year and come out stronger has inspired me to look at life differently. I think something like this changes your perspective. It shows you what is important in life. I love my job and love what I do working with impressive student-athletes and being around sports but this year has also reiterated to me that at the end of the day, family is most important.
We, in CoSIDA, spend so much time at work and always have something else that we need to do at work. I would challenge people in our industry to find ways to be more efficient in what we do so you don’t have to spend all of your time at work. There needs to be a work-life balance in our profession and to find time to spend with the ones you love, because you never know when that time will run out.
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