My son Gavin Quimby loved superheroes, particularly Superman, to whom he shared more than a passing resemblance with his dark hair, piercing eyes, and fair complexion. It should not surprise anyone Gavin's nickname was Super Gav.
Gavin was the kind of child who was always in motion, then my husband Nick and I noticed he was having trouble with his balance and seemed like he was afraid of his own body. It would take five months for doctors at Gundersen Healthcare System in La Crosse, Wisconsin to confirm the devastating diagnosis of juvenile-onset metachromatic leukodystrophy. Our doctors referred Gavin to specialists at the University of Minnesota.
Though he was showing symptoms of leukodystrophy, doctors at the University of Minnesota told us a stem cell transplant might slow down the progress of the disease. The stem cell transplant had a 1 in 4 chance of getting Gavin more time, but the doctors warned us the treatment would be hard, and that there would be risks. We hoped Gavin would be one of the lucky kids the treatment helped.
Even though I am a surgical technologist and Army veteran and my husband Nick is a police officer and Iraq War veteran, my medical training and our military experience could not prepare us for what Gavin would endure over the next year. Since Gavin's diagnosis in May of 2014, my son spent 3 months in and out of the hospital.
The stem cell transplant itself was grueling, but the months away from home were the toughest part of all. I stayed with Gavin at The Ronald McDonald House in Minneapolis and Nick would live at home in Winona, three hours away, with our older daughter Ali and take time off from work so that the family could be together on the weekends. The time away from home was hard on everyone, particularly Ali. When Ali made the three hour trip to see Gavin, no matter how our son was feeling, Gavin would light up when his sister was around.
Nick and I were so busy trying to keep things going, we did not have a lot of time to dwell on the toll it was all taking. But Ali did, she missed me, her brother, and I think she missed the way our family used to be most of all.
The stem cell transplant would be successful, but the risky side-effects the doctors had warned us about kept Gavin in the hospital for six months. The doctors marveled at how well Gavin had gotten through the transplant. But then Gavin developed a rare condition that had compromised his pulmonary system, and for months tried everything they could to preserve his lungs. As Gavin would stabilize and get better, the condition would progress again and we would return to the hospital.
After a year of active treatment with Gavin not getting better, we had the toughest conversation of our lives with our son's doctors. And so, we made the heart-wrenching decision to bring Gavin home and have him live the rest of his life in comfort and surrounded by love from his family and friends. We got to use
Gavin's Make A Wish which they hosted a wonderful Minion- themed party for Gavin.
I marveled at my son’s courage through his transplant process, his graft vs host disease and numerous other health issues but it was time to go home to laugh and smile. I could see Gavin was so relieved to be home even if Nick and I feared for the future.
Gavin spent the next few weeks being cuddled, hugged, kissed, watching cartoons and paid visits by all who loved him. On September 8, 2015 in my loving arms with his dad next to us holding his hand, Gavin passed away to be with the angels. He is no longer in pain. He no longer has to be tethered to breathing tubes, feeding tubes or other monitoring devices. He is running and playing like he did before his diagnosis. We miss him with a sadness that is indescribable every minute of the day.
We wanted to save our son, and now we want to help the children who will come after Gavin.
In October of 2015 The Super Gav Act, a Newborn Screening law passed so that three disorders like Gavin's will be screened at birth so these babies affected by the disease can be treated as soon as possible. Adrenal Leukodystrophy, Pompe and Hurler Syndrome(MPSI) will be detected at birth so these babies can have a chance at surviving with prompt treatment even before symptoms present themselves.
We have testified to state officials about the importance of newborn screening for leukodystrophy and raised funds for research. We are so excited about how the pharmaceutical company Glaxo Smith Kline and Dr. Alessandra Biffi are seeking FDA approval for a gene therapy to treat this horrible disease in the United States.We want to help the doctors save these beautiful children so we started a research fund through Boston Children's Hospital called The Gavin Quimby Research Fund to start this miraculous treatment to one day find a cure for MLD. We are so happy for other families whose children with MLD have benefitted from Dr. Alessandra Biffi's research. We are grateful for the miracle of children with Gavin's disease who have gotten the chance to go to kindergarten this year the way Gavin was supposed to. How we wanted Gavin to be one of the lucky ones.
Gavin's legacy will be doing more than curing leukodystrophy, we are going to be working for a world where children with leukodystrophy will never even know they are sick. Newborn screening will identify children with the disease at birth and gene therapy will replace the faulty gene and simply give children back their childhoods.
That's the future we want for these kids, and that's why we wanted you to hear this story.
If you are interested in donating to The Gavin Quimby Research fund you can donate here on his page or send a check to Merchants Bank of Winona made to Gavin Flying for a Cure.
Attn: Gavin Flying for a Cure
Merchants National Bank
102 East 3rd Street
Winona, MN 55987
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