We are so grateful that we were given the gift of Larry. Our Mighty Bear Man.
Larry was born a Wolverine on June 11, 2001, at the University of Michigan’s Mott Children’s Hospital.
Larry was delivered by C-section at University of Michigan's Holden Hospital. He made it through one of the first hurdles of his life. "Birth." Larry was born with spina bifida. Spina bifida is a birth defect that affects the lower back and sometimes, the spinal cord. The kind he has is called mylocystocele and caused him to have a hole from all around his sternum and rib cage to his rectum. There was no skin. All of his organs were out. This hole is called a giant omphalocele. An omphalocele is a type of abdominal wall defect in which the intestines, liver and occasionally other organs remain outside of the abdomen. Ompahloceles occur in 1 out of 5,000 births and is associated with a high rate of mortality. With most O's, children's organs are out through a small hole and can be pushed back in with a few surgeries and sewed closed. Larry had no skin at all to put the organs back in to. He also was born with cloacal extrophy, which is a severe birth defect where much of the abdominal organs, the bladder and intestines, are exposed. It is an extremely rare birth defect occurring in one in 200,000 pregnancies and one in 500,000 live births. Larry was split at his pelvis, he had a 14cm gap where his pubic bone should have been. He had no stomach muscles at all and no colon and eventually lost his bladder. Larry also was diagnosed with short gut syndrome which is a malabsorption disorder caused by the complete dysfunction of his bowel, club feet, mild cerebral palsy, and other diagnoses. We were told he wouldn't make it to birth, if he did-he wouldn't survive birth. If he survived birth, Larry was given a 20% chance of surviving his first 2 weeks of life.
Throughout his many illnesses, surgeries and stays at the hospital, Larry learned to never give up, he learned to give his all and to work as a team. He learned to be brave and have courage. We chose to put the words "courage and brave" in the nonprofit name, because Larry has been told since he was a baby, that he has incredible courage and is very brave, having endured more than 100 surgeries. Larry loves his surgeons, nurses, and all of the hospital staff. His medical staff treats Larry respectfully, includes him in decisions when appropriate, and creates a loving and caring atmosphere.
Larry's gift to us has been his empathy for others, and his perspective of life, since his entry into this world was so different than his 5 siblings. We have received and are grateful for the tremendous amount of help we have received from friends, family and many complete strangers. For years we have always wanted to find a way to help others as we have been helped. We know what it is liked to have your electricity shut off, need groceries, financial hardship during unending medical crisis. We want to help patients and their families at Larry's home away from home, Mott Children's Hospital.
One morning when Larry was about 13 years old, Dad was helping him with some personal care in his bathroom. Larry looked up at and asked, "Dad, when did they finish putting YOU back together?" Confused as to what Larry was asking, it took a second to understand what Larry meant by..."finish putting me back together?" Then it clicked, we had always just assumed that Larry understood that he was different and that most people didn't require multiple surgeries as they grew and matured. Most people were born... and that was it, they grew up naturally. Due to his many surgeries since birth, his everyday medical needs, Larry's perspective was that everyone was "put together" when they were born. Larry's perspective really made us think. "You never know what the person next to you is going through or how they view life, so be kind and empathetic to others...." When Kathy would take Larry to Mott for appointments, or to the grocery store, anywhere, people always stare. Kids stare. And not in a good way. Kathy has literally had people come up, in front of Larry as if he can’t hear and say, “Will he live?” “Will he die?” “How much longer does he have?” “What’s wrong with him?” And Larry would just hang his head.
As Larry was growing older he was understanding how different he really was from most kids his age. At 15 he was having body image issues, and was feeling down about how he looks and about how others may see him. He told Kathy, "I hate my legs!" He wished badly to become a football player or an American Ninja Warrior.
Socially, Larry interacted mostly with his older siblings and medical staff. There were no playdates with other kids his age, attending sleep overs, birthday parties or attending school on a regular basis to learn how to interact socially with his peers, because of his health.
In the fall of 2016 Larry Jr became a member of the University of Michigan football team. A nonprofit called Team Impact which matches up chronically ill children with sports teams, connected Larry to the University of Michigan’s football team. At the same time he was invited to be an honorary teammate of his Pinckney High School Team. The moment this happened, Larry’s life started to change. It wasn’t long before Larry had the cell phone numbers to many of the players, coaches and staff. He started to text some of the players, go to games and drop off cookies for the players at Schembechler Hall. As the football season came and went, Larry stayed connected to his Wolverine friends. Larry’s small world became much larger. We could see Larry’s social skills improving along with his self-esteem! He was blessed to be a “team member” with the Michigan Wolverines for 3 wonderful years and the Pinckney Pirates for 4, and was able to make many friends. Larry's experience on the University of Michigan football team was incredible, not just the game experience's, but most importantly was the relationships he developed when he was part of the team. He now has three best friends from that time, John O'Korn, Grant Newsome and JT Rogan. All part of the board of Larry's nonprofit.
Since he became part of the football teams a miracle has happened. Now people stare and say—“Hey! That’s that kid! That’s Larry! He’s on the team!” And Larry can’t stop smiling, holding his head up, and feeling proud of himself. What a difference in his life. Since his time with the football, Larry doesn’t seem to get down about his body. Now he works out doing his physical therapy daily. He hasn’t looked in the mirror anymore and ask us: “Do I look weird to you?” Larry looks in the mirror and fusses with his hair as he puts hair gel in it to make it stand up the way he likes it. He also beams with pride as he looks at himself in the mirror. He loves to help many local nonprofits through public speaking, volunteering as a Hope Ambassador at the hospital, and fundraising, just to name a few. He loves to help people like him to accept their medical conditions and know that the world is a huge and awesome place.
Larry comes from a loving family. His sibling show him “no mercy” and treat him as if he doesn’t have challenges. Larry will laugh at himself or tease back when hanging with his family. His siblings just want Larry to find his purpose and be happy. They all love and care for him so very much.
Larry's self esteem and confidence continue to grow. He no longer gets down on himself, and is looking forward to the next chapters in his life. Creating The Larry Prout Jr (The Bear) Courage Fund is just one chapter. The baby who was given a 20% chance of survival, is choosing to do something bigger than himself. He is choosing to help others just as he has been helped.
Comments