The Jones Family Story

Garrett - Born 1997; Gavin - Born 2001


The Jones boys, Garrett, 16 and Gavin, 12, were diagnosed with Classic duplication PMD in 2001. Garrett was 3 and Gavin was not yet born. We (their parents, Gina and Gordon) made the decision to have Gavin partly because of the rarity of PMD. We felt that they would at least have each other as brothers and partners. We were warned by a physician not to expect Gavin to be as highly functioning as Garrett, even though they both had 80% of their cells effected by the duplication of the PLP gene.

That neurologist was right. Gavin’s first 5 years of life were medically very challenging. He had to have a tracheostomy before he turned one year old. Six months later, I had to save his life using CPR because his trach came out. At 3, due to severe gastric flux causing failure-to-thrive, a gastric tube was needed.

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!

Gavin does not talk, but that does not stop him from singing karaoke with his big brother, who has slurred speech. He also loves to read audiobooks. In school, he is learning to use an augmented communication device. Gavin enjoys many adaptive sports like, T-ball, bowling, bocce ball, sailing, hand cycling and, most recently, sled hockey. Believe it or not Gavin loves swimming. But his most favorite thing to do is driving his wheelchair around the city with his brother, or off-roading when we go camping.

Garrett has always been a wonderful big brother. From the day Gavin came home, on Christmas day, 2001, Garrett wanted to hold and feed him. And, of course, I let him. They are very close.

Garrett has had his share of medical issues of late, starting with hip surgery for a dislocation, then a tonsillectomy and adenoidectomy due to obstructive sleep apnea. He also has mild central sleep apnea.

Most recently, as he was in the height of his growth spurt, Garrett developed severe scoliosis. This required spinal surgery, and recovery with a torso brace that lasted through the beginning of high school. He also suffered a severe mental break down. Garrett championed through this tough time, and completed his freshman year on the honor roll and with a girlfriend. This year, as a sophomore, he is challenging himself by trying out for the golf team. His school has never had a student with disabilities join the team, until Garrett. He continues to enjoy swimming, sailing, fishing and playing power soccer.

Garrett and Gavin are never afraid to seek out new things and meet new people. Though by some accounts their future is not bright, Garrett and Gavin live a life filled with love, compassion, fun and adventure. My husband and I enjoy them every day. Our sons are the light of our lives.