This story first appeared in the Information Point newsletter Our World in 2010, when Mark and Erin told us about Gracie, a very special new addition to their family.
Some of you may have heard about a very special dog, Nibs, who is helping with groundbreaking research on Will’s condition myotubular myopathy.
Well, we always thought in the back of our minds that if Nibs has puppies and they ever needed a home we would love to adopt one. We’ve had a soft spot in our hearts for Labrador Retrievers for years – our beloved yellow Lab Maple is 11 years old now, and we had been thinking that William (and Maple) would love to have a puppy. When Alison (Frase) and Erin met up at the MTM / CNM Family Conference in Houston, an idea was sparked. A few weeks later, we got a call saying that the puppies are getting ready to be adopted out, and would we still be interested? The answer was a big YES!
We were blessed by welcoming one of these very special labs into our home, a pup we came to name Gracie. Gracie is unaffected by the MTM gene yet played a very important role in the groundbreaking research by serving as a control sample for the researchers – measuring her ‘normal’ muscle strength as she grew. It was a very important job for a little puppy, and we are very proud and grateful for her work and how it will help our son and other individuals affected by myotubular myopathy and other congenital myopathies one day.
She was five months old and a little over 35 pounds when she arrived at our home in the fall. Today, she just recently celebrated her first birthday and is about 55 pounds, most of that we think is from her BIG HEART. She is full of love, tender, and incredibly sweet. She loves to play and especially enjoys exploring our backyard and playing with her new ‘big brother’ Maple.
She loves to pay extra special attention to William and loves to snuggle. We somehow feel that she knows that they are connected in a very special way and that one day the research that all started with discovering her mother will lead to amazing things for our son and those affected by myotubular myopathy. Our hearts will forever be grateful to Nibs, Alison and Paul Frase, the Joshua Frase Foundation, and the dedicated researchers for blessing our family with Gracie and blessing the MTM / CNM community with hope for a cure.