Gavin Nicholas Quimby

WINONA----------------------------------- Gavin's Life Story ---------------------------------------Gavin Nicholas was born February 22, 2010 to Nick and Shanna Quimby. He came into the world with a thoughtful look on his face and quietly gazed at his dad talking to him from his bassinet. When arriving home, Gavin was welcomed by his big sister Ali and dog Rocco. Gavin was a happy baby and loved being held and rocked. He also loved to be up all night and demanded attention from his parents at all hours of the day and night. He was moderately liked by his sister Ali at first and she was a big help with feeding him his bottle, but tended to forget to feed him his whole bottle when her attention was attracted elsewhere. He also was the victim of her 'hugs' that involved her crashing into him and knocking him to the ground. Nick and I feel he developed his toughness from his older sister's violent love. Ali and Gavin had a wonderful bond that was entertaining to watch as they went through their different phases of life. When Gavin was a little over a year old he seemed to have a tough time walking. He was a little behind the other kids his age and tended to drag his left leg. Nick and I took him to the doctor and he said that he was probably fine but to watch him and if he wasn't walking by fourteen months to bring him back. Gavin started walking shortly after and then running and then getting into everything. Nick and I breathed a sigh of relief and watched our little guy grow up. Gav had the greatest sense of humor. He had a constant smile with dimples that melted the hearts of everyone that met him. He had the girls at his daycare wrapped around his little finger and was never in need of a hug or lap to sit on. He was the youngest grandchild on Nick's side and was spoiled with love by his grandparents and his cousins. He loved being dressed up by his cousins and parading around in doll clothes that only he could still fit into. He was the only boy cousin on his mom's side for a while and his girl cousins loved to cuddle and play babies with him. Gavin was a sensitive kid and was empathetic to everyone. If someone was crying he was known to go up to them, wipe their tears, and play quietly with them until they felt better. He also loved to laugh. His giggle was contagious and his big brown eyes would sparkle with mischief when he was thinking of a funny story or talking about poop with his sister. He also loved to make other people laugh and would yell out after tripping 'I'm okay!' Chris Farley style and making a big production about getting back up. He could do something so naughty but charm his way out of a punishment by just batting his long eyelashes. Gavin was a healthy kid until around the age of 3. He wasn't walking stairs very well and would sporadically fall and lose his balance. He needed help stepping up and down curbs and just seemed to be having a rough time with doing all the normal physical things kids his own age and younger could do with ease. We brought him to an orthopedic surgeon thinking it was bone related. He referred us to a neurologist who wanted to do a brain MRI. On December 20, 2013 Gavin underwent an MRI and the neurologist gave us news that would devastate and change our lives forever. Based on his scan, the doctor felt he had something called metachromatic leukodystrophy(MLD), a fatal neurologic disease. Gavin's body was lacking an enzyme that broke down harmful wastes in his body causing the myelin sheath on his brain and central nervous system nerves to break down and eventually the nerves would die. This had been happening for a while which is why Gavin walked off balance and had trouble with his balance. This was not a concrete diagnosis yet, there were still other tests to be done. Our world was turned upside down. Our beautiful little boy may have a terrible disease and we felt helpless to stop it. We continued to put him in swimming and tumbling classes to keep him moving hoping that it was a slow progression. We also decided to take a family trip to Disney World in April of 2014 so that Gavin could meet Mickey Mouse. The kids took their first airplane ride and met all their favorite characters. We took tons of pictures and made thousands of memories. But if you were to ask Gavin what he did at Disney World he would say, 'We slept there! We stayed in a hotel!' Every day was magical for him and we are thankful that we were able to make him so happy with memories to talk about everyday. Especially when he was really sick. In May of 2014, we were told the definitive diagnosis was MLD. We started slowly telling family and friends about his diagnosis and wondered what to do next. We knew that he was going to have numerous doctor appointments and we worried about future finances. A friend, Kristi Rounds, had an idea of a benefit to help our family with his upcoming medical needs. Soon others started joining in and pretty soon Gavin had an army of supporters. This led to the birth of Super Gav. Nick's friend and coworker, Jay Rassmussen wanted to create a special day for Gavin where he could be a super hero and 'save' Winona. Tabetha Fischer designed the Super G logo and made T shirts. Jay wrote a script for a movie to be played at his benefit where Gavin made the winning touchdown for the Winhawks, put out a fire at the ABC School, and saved a damsel (daycare mom Cindy Gerdes) from getting her purse stolen. On June 19, 2014 Gavin became Super Gav and saved the city of Winona. For his heroic actions, Gavin was given the key to the city by the Mayor of Winona. During this time, we were told we could go to the University of Minnesota for a stem cell transplant, a procedure to slow the progression of his MLD. After numerous doctor appointments we were told that Gavin was a great candidate for the transplant and after his benefit he would receive new cells that would make the enzyme his body was missing. We spent the rest of the summer traveling and spending time at the lake with friends. We visited family and lived life to the fullest because we didn't know what the future held for us. On August 11,2014 Gavin received umbilical stem cells from an anonymous donor. Gavin sailed through transplant like a champ and his doctor told us he was his fastest patient to engraft. He was happy and kept getting stronger and stronger after transplant. He continued to walk and would ride his trike around the Ronald McDonald House. His doctors called him amazing and he was truly living up to the name Super Gav. Then he got sick with a rare lung virus in September that put him in the hospital for a month. His lungs were compromised and he had high fevers from bacterial infections. But he slowly got better and we were allowed to come home for Halloween and then home for good in November. We celebrated Thanksgiving and Christmas as a family with limited visitors due to his high risks of infection. He was unable to go to school or daycare because of the same reasons so we hired Catherine Mohr, one of his daycare girls to be his nanny. Catherine and Gavin were two peas in a pod. Both are sarcastic with the same love/hate sense of humor for each other. She was his 'Darling Cafrine' and he was her little buddy. Gavin turned five in February and we were getting concerned about his breathing. He was short of breath, was losing his ability to speak as well as he had before, and his appetite was diminishing. He still smiled and laughed but it was obvious he was not well. In April. Gavin was admitted to the hospital with a rare graft versus host disease in his lungs caused by the infection he had in September. He spent three months in the hospital fighting for his life while we prayed for a miracle. Slowly, he started to get better and we came home in July. But he was on oxygen and dozens of medications. He was unable to walk, stand, or do anything physical without being short of breath. He still smiled, still laughed, and still found joy in life. We were thankful that he was still with us. During that hospital stay his parents went before the state capitol to introduce newborn screening for lysosomal disorders like leukodystrophy. Senator Jeremy Miller introduced the bill as The Super Gav Act. This fight is still going on and his parents are determined that it will pass to not only to help newborn babies but to pass along Gavin's legacy. Gavin was home with us for six weeks when he had another set back. His breathing was progressively declining and he seemed in pain when we held him. At his clinic appointment his doctor examined him and told us he was going to admit him for observation. After a couple of days of receiving treatment in the hospital, Gavin was not responding the way he had before. He was in pain and miserable. Nick and I knew Gavin was tired of fighting so we made the decision to stop treatment for his graft versus host disease and bring him home to be with us. The doctors agreed with our decision and confirmed that the combination of his poor lung function and the progression of his MLD was untreatable. We left the hospital to bring our baby home to live the rest of his life comfortable and happy.We spent his last two weeks at home surrounded by family and friends. Make A Wish threw a minion party for him, we had bonfires with s'mores, we took family pictures, Superheroes danced for him, and we cherished the moments we had left with our Gav. On Tuesday September 8th at 5:38 am Gavin accomplished his final mission. Gavin died in his mom's arms with his dad next to them. Gavin was told how much he was loved, how he would be free of braces, free of medication, and free of pain. Gavin is free to run, jump, swim, shake his booty, and play at heaven's playground. Gavin has been an inspiration to his family, friends, the community and people who have never met him. Fly high, Super Gav, Fly high. --------------------------------------- Gavin's Obituary -------------------------------------- Gavin Nicholas Quimby, 5, of Winona, died peacefully at home with his parents by his side on Tuesday, September 8, 2015 due to complications from a transplant for Metachromatic Leukodystrophy.Gavin was born February 22, 2010 at Winona Health to Nicholas and Shanna (Lueck) Quimby. He enjoyed laughing with his sister, driving his cop car, swimming, spending time with his daycare girls, playing at the park, riding the Gator with his grandma and grandpa, surfing Netfix, playing his running game on the Ipad, and traveling to Disney World. Gavin loved Despicable Me, minions, Super Man, but he loved his mom the most. Gavin was a fighter and smiled through his entire journey with MLD. He has inspired, uplifted, and touched thousands of lives in the area.He is survived by his parents, Shanna and Nick Quimby of Winona; older sister, Ali Quimby (8); lovable dog, Rocco; paternal grandparents, Roger and Judy Quimby of West Concord; maternal grandparents, Jim and Julie Lueck of Redwood Falls; surrogate grandparents, John and Jullie Levinski of Winona; aunts and uncles, Stacy (Bill) Wood of Kasson, Melissa (Corey) Lukes of Millville, Lorna (Joe) Plaetz of Lucan, Quinn Lueck of Redwood Falls, and Ian Lueck of Redwood Falls; many cousins; great grandparents Don and Helen Lueck of Redwood Falls; June Rindelaub of Marshall; and Maxine Quimby of Kenyon. Gavin was preceded in death by his great-grandparents, Duane and Marcella Buck of West Concord, Rolland Quimby of West Concord, and George Rindelaub of Marshall. The family would like to express their sincere gratitude to the University of Minnesota Masonic Children's Hospital, Senator Jeremy Miller, friends, family, and to the entire Winona community for the ongoing support.Memorials are preferred for MLD research and can be directed to Gavin Flying For A Cure at Merchants Bank, 102 East Third Street, Winona, MN 55987.Visitation will be held from 3-8 p.m., Friday, September 11, 2015 at Hoff Celebration of Life Center (3480 Service Drive, Winona, MN 55987). To best honor Gavin's life, jeans and Super Gav shirts are encouraged.Funeral service will be 11 a.m., Saturday, September 12, 2015 at Central Lutheran Church (259 W. 7th Street, Winona, MN 55987) with visitation one hour prior. Pastor Michelle Rem will officiate.Gavin will be laid to rest at Woodlawn Cemetery in Winona. Please share a memory of Gavin with his family, view his video tribute, and read his complete life story at www.hofffuneral.com#FMLD
Tribute video can be found at: videos.lifetributes.com/628839