Thank you for sharing this insight to the life of Duchenne. Its very heart breaking to see, but i understand its needed to spread awareness. Im very new to the world of Duchenne, and i dont fully understand it. Can i ask if Fonte was ever on steroids or done any therapys from his early years from diagnosis?
Hello! Yes Fonte was on prednisone for 5-6 years of his life. He had severe side effects like the moon face, weight gain and difficulty sleeping. He lost the ability to walk and at age 10 he lost the ability to use his arms. We discussed with his Dr that we felt prednisone wasn’t helping him maintain his strength and that his quality of life was better without the steroids. He was weaned off at 10 years old We’ve done lots of therapies and have even tried robotic arms. Unfortunately none of them worked for fonte. He has come to terms with his condition and his last wish is to be open about his illness and spread awareness
Hello!!!! Praying you get 1000 subscribers! Will share and spread the word. ❤️🙏
Thank you so much!! It would mean so much to Fonte
Thank you for sharing this insight to the life of Duchenne. Its very heart breaking to see, but i understand its needed to spread awareness. Im very new to the world of Duchenne, and i dont fully understand it. Can i ask if Fonte was ever on steroids or done any therapys from his early years from diagnosis?
Hello! Yes Fonte was on prednisone for 5-6 years of his life. He had severe side effects like the moon face, weight gain and difficulty sleeping. He lost the ability to walk and at age 10 he lost the ability to use his arms. We discussed with his Dr that we felt prednisone wasn’t helping him maintain his strength and that his quality of life was better without the steroids. He was weaned off at 10 years old
We’ve done lots of therapies and have even tried robotic arms. Unfortunately none of them worked for fonte. He has come to terms with his condition and his last wish is to be open about his illness and spread awareness