Gage’s 20th: Defying the Odds
Gage is celebrating his 20th birthday today! He has defied the odds and lived 18 more years than science expected he would. What a testament he and the others kiddos with NGLY 1 are to pure will! Doctors may depend on science and data to explain their future, but only these kids’ sheer determination, and God’s plan, will chart what lies ahead.
During this past year, Gage has undergone two extensive hand surgeries to relieve the contractures that have developed over time. His turned-in wrist and tightly curled fingers are now open and he’s participating in hand therapy to re-learn how to use them again.
The surgery was no guarantee the use of his fingers would return, it would only guarantee him the possibility of remembering how to use them with therapy, and the loving promise to hold a loved one’s hand whenever he wanted. We’ve missed that. While we’ve held his clenched fist, there’s something special about the clasping of a hand in a gesture of love. We pray over time he can use his fingers to push buttons, make selections, and maybe point like he used to. We also know if that doesn’t happen, we’re ok with him having an open hand to slide ours into.
Gage is the first to have this procedure done…a pioneer of sorts…as our NGLY 1 kids have strikingly similar hands as they get older and may need the correction at some time. Maybe this will be a common procedure for relieving the contractures that occur despite bracing and therapies.
This year, Gage received a new jogger from Team Hoyt to run in races with his parents! It’s super comfortable and goes really fast…well, as fast as his parents can run! We’re also going to watch our hero, Jon Crosby, run in his 3rd full Ironman race in October. We’ll be there cheering him on while he swims 2.5 miles, bikes 112 miles, and runs a full marathon (26.2 miles). It will be so exciting to see him again!
Most recently, we traveled to California to participate in Grace Science Foundation’s NGLY1 natural history study in California. It was a beautiful and busy trip, but we’re willing to do whatever it takes to help the scientists.
Gage is in his last year of formal schooling. We have 365 days left to learn as much as possible from the therapists and teachers before we become the primary caretakers who will perform those duties or find agencies to assist in providing them. He’s such a joy to have at home that when he is done with school, our most important goal will be to mark as many experiences off of his ‘Bucket List’ as possible. While most will be adaptive, he’s going to experience hiking, surfing, hang-gliding, racing, visiting memorable places, and even more when we have no jobs to hold us back. I retired from 29 years of teaching special education this past May, and my husband intends to retire in the next few years, so that will allow us unlimited possibilities to give Gage the world.
Gage deserves the world. He’s made our worlds so much better…so much more focused, so real, so honest. God has taken a boy who has never uttered a word and shown truth. Our teams of scientists, researchers, and doctors are doing all they can to help our children, and they need to know they matter to us. We are counting on them and relying on them…and we’re also here supporting them and believing in them.