The Jones Family Story
Garrett, born in 1997, and Gavin, born in 2001
Gina shares the story of her sons, Garrett and Gavin:
Garrett, now 24, and Gavin, 20, were diagnosed with classic duplication PMD in 2001. Garrett was 3, and Gavin was not yet born. A neurologist warned us not to expect Gavin to be as highly functioning as Garrett, even though they both had 80% of their cells affected by the duplication of the PLP gene.
That neurologist was right. Gavin’s first five years of life were medically very challenging. He had to have a tracheostomy before he turned a year old. Six months later, I had to save his life using CPR because his tracheostomy tube came out. At three, due to severe gastric flux causing failure-to-thrive, Gaving needed a gastric tube. In addition, Gavin was also in and out of the hospital, besieged by respiratory issues. Because his immune system was under siege, he was susceptible to other infections.
Eventually, our little fighter started to get stronger, having fewer and fewer hospital stays as he continued his therapies. Shortly after Garrett received his second power wheelchair, Gavin got a chance to try one. It was as if we gave him a new lease on life. He had the freedom to go anywhere that he wished!
Garrett has always been a wonderful big brother. From Gavin’s homecoming on Christmas day, Garrett immediately wanted to be involved in caring for his little brother. They have been s thick as thieves ever since. We absolutely love this about our boys and more.
Garrett has had his share of medical issues, including hip surgery to correct a dislocation and a tonsillectomy and an adenoidectomy to address obstructive sleep apnea. He also has mild central sleep apnea and now needs BiPAP at night. Garrett also developed severe scoliosis. This required spinal surgery, and recovery, with a torso brace that lasted through the beginning of high school.
The guys thrive on their creativity, good food, long strolls in our neighborhood and city, including encountering nature in the parks, and lots of love. We are avid travelers. Road-tripping is the best! We enjoy visiting other PMD families along the way. Exploring our city's many destinations and cultural events and going on family day dates are also favorites. We even live in a National Monument.
Garrett and Gavin are also adaptive sports enthusiasts. They have been sailing for 12 years. Gavin's favorite sport is Boccia Ball. Garrett's fav is Archery. I must mention that both boys enjoy rock climbing. I was also invited to climb with them. My kind of inclusion. My guys inspire me.
Garrett and Gavin are never afraid to seek out new things and meet new people. Our boys live a life filled with love, compassion, fun, and adventure. My husband and I enjoy them every day. Garrett and Gavin are the light of our lives.
