Meet Will

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[video: in Doug’s Words]

[video: Will’s Story]


As told by family and friends


“I met Will just before his 4th birthday. His bright smile and ‘thumbs up’ lit up the room. I’ve had the pleasure of being one of his therapists for the past 3 years. He has stolen part of my heart with his smarts, his love of roughhousing, his competitive spirit, and his work ethic–even when he’s not feeling his best.

A ‘boy’s boy,’ Will loves to pretend he is a famous athlete winning the championship; to throw bean bags at Aliens when flying on our ‘spaceship’; to wrestle a bad guy (or bean bag chair) to the ground; and to even be a bit naughty at times!”

by Julie Bayless, Occupational Therapist


“I have had the privilege and joy of knowing Will for just over 3 years. I treat him weekly in speech therapy. He is an exceptional kid. He has deficits much more severe than many of the kids I see, but he works harder than most to overcome them. As I have gotten to know and work with Will, I am constantly amazed at his determination and perseverance. He works so hard on both the good days and the bad. Will is able to make everyone in our clinic smile just by his sweet wave, thumbs up and smile.

One of my favorite things to see is when he or I make a joke while we are working and he is laughing so hard and smiling so big, he needs a minute before he can continue to practice. He is always ready to passionately share about the most recent Penguins hockey game and what he and his sister were up to over the weekend. Anyone who knows Will and his family cannot help but love them, be in awe of them, and pray for the possibilities that they have in front of him!

by Jaclyn Brede, Speech Language Pathologist


“In 2012, my retired husband and I watched with delight as a new couple moved into our Cul de Sac. Their baby, Will, was a perfect little boy, affectionate and always smiling. I and my husband became honorary Gram Barb and Poppy Chuck. We watched Will take his first steps and ride his new toys, and we laughed at his new words. We practiced “Up” and “Down” the steps on my front porch. It was a joy to see Will meet his milestones of walking, climbing, talking, growing taller.

I remember when Kasey shared her motherly concerns with me. “He falls,” she said. After 40 years in nursing, my red flags went up. Then came the diagnosis:  Leigh Syndrome. Nothing prepares a family for news like this. Nothing. What do you mean, ‘No Cure’? Neighbors were crying in the driveway.

We still live near our Little Will. He still smiles. He give thumbs up to say ‘yes’. He smiles about his new wheelchair and his Halloween Hockey costume. He is mostly non verbal, but amazingly he understands everything. The sign in my kitchen reads: Loved you yesterday, Love you still. Always have, Always WILL.”

by Barbara Hoffman (Gram Barb), Will’s neighbor


“I met Will and his family just this year on Labor Day. From the first moment, Will looked up at me from his wheelchair and never stopped smiling. I wish you could see his grin for yourself. It lights up any room he’s in, and he never goes anywhere without it!

At that first meeting, I learned that Will’s favorite sport is hockey. His father, Doug, asked him what he wants to be when he grows up. When Will threw his arms in the air and mouthed the word ‘goalie’ with a look of utter joy on his face, I felt my heart shift. I knew in that moment I’d do whatever I can to help Will find his cure so he can live a full life. If I were a scientist, I’d absolutely want to apply my technical knowledge to his case. Since I’m not, I’m doing the next best thing:  raising funds his researchers need to have a chance to save him.”

by Erica Lee, campaign volunteer  


“I love watching sports with Will, especially football because of how excited he gets when his favorite team makes a touchdown! He yells, laughs and sometimes gets a little upset at some bad plays, just like many other sports fans. He continually amazes me by knowing all the rules to many sports. He is proud to let you know when a bad call was made! Before each game, he slowly slides off the couch and places his tiny hand over his heart as the National Anthem is played. No one told him to do this. Will makes me proud to be his PawPaw!

My favorite time in the morning is when Will and I are sitting alone on the couch and he reaches over and gives me a hug and softly whispers, “I love you PawPaw” in my ear. Can’t get any better than that!”

by Ed Lewis (PawPaw), Will’s maternal grandpa


“The moment Will was born, I knew he was going to be a very special little boy. He was perfect in every way possible and there was just something magical about him! Even all the nurses who took care of Will as a newborn commented on what a beautiful baby he was. Almost 7 years later, Will continues to radiate that magical, angelic look in his beautiful blue eyes. He has an infectious smile that seems to captivate anyone’s heart that is lucky enough to meet him! I also can’t deny the fact that Will gives the best hugs ever! I’m blessed beyond words to be called Will’s “MeMa”.

by Kelly Lewis (MeMa), Will’s maternal grandma


“I first met Will at Miracle League of Frisco Baseball. When I saw him across the way, I went up and introduced myself because I wanted to be his friend. He was so handsome and happy! I love his big blue eyes and his famous smile. We walked bases with his walker and ran bases in his chair.

My forever love of Will didn’t stop there. Now we hang out watching hockey and movies and playing with his toys. He’s introduced me to his favorite hockey team, the Pittsburgh Penguins, and I even know some players’ names. He loves Captain Underpants and using his hypno-ring to ‘hypnotize’ me into a chicken. He is so funny and loves to make jokes! I just love him so much!

by Allison McCarthy, Miracle League volunteer


“As Will’s aunt I had the greatest pleasure of welcoming him into this world. From day one his bright blue eyes captivated my heart! Whenever our families get together, his cousin and best friend Jax is always the first one out the door running to greet him. They both have a passion for hockey and like all little boys, they love fart jokes! From the minute they set eyes on one another, the laughs start and the hockey sticks and goal come out. They play their hearts out until bedtime.

I’m in the medical profession, and it breaks my heart there has not been much research on Leigh Syndrome. We are in a race against time and need your help. Together we can make a difference!

by Kelsey Rivera, Will’s aunt


“Will is our grandson. We live 700 miles apart, so we love getting phone calls saying ‘Will wants to Skype with Grandma and Grandpa!’ He wants us to hear his latest news and gives us lots of smiles and thumbs-up as we get the details. Sometimes Will just wants to call to tell Grandpa the latest score in the game he’s watching. He knows Grandpa’s favorite hockey and football teams—and we know his!

When we go to visit, Will and I (Grandma) spend lots of time playing number/letter/word games. I love that he loves it as much as I do! We get out the magnetic letters, numbers, and board. I ask lots of questions. Will earns counters, stars, and stickers for giving lots of right answers. The hockey stickers are his favorite, but the football stickers come in a close second. He enjoys puzzles, too.

Will and Grandpa play hockey as Will guards the net set up in the doorway. His wheelchair makes it a little tricky, but the enthusiasm is high, the effort is all-out, and the pride in making a save is real.

Will is a fun-loving boy whose smile and zest for life are infectious!”

by Lynn and JoAnne Woleben, Will’s paternal Grandpa and Grandma


“Will is our nephew. His never-ending happiness in the face of all his challenges is an inspiration to everyone that meets him! Despite all that Will has been through over the last few years, there hasn’t ever been a video call or visit where we don’t see him constantly smiling and laughing. Every time we visit he greets us with the biggest hug possible. He has genuine love and empathy for everyone he meets. Despite the disease confining him to a wheel chair and effecting his speech, he doesn’t let anything hold him back. He loves playing with his cousins and makes sure he is always in the mix.

Will also has passion for sports. Hockey is his first love, but he likes to watch (and play) them all. It is so much fun to watch or play a game with him and see the emotional attachment he has with every goal, touchdown, tackle, or dunk.

Always positive. Always happy. True perseverance. Where there is a Will, there is a way!

by Sam and Paula Woleben , Will’s aunt and uncle


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