“For our boys, we have found that the AMT products work the best because they really are nice and low profile while also helping to prevent granulation tissue.”
Mom & Dad
Hello! Our boy’s names are Elijah, Simon, and Ezra. All three boys have a condition called Creatine Transport Deficiency. This is a condition that causes a wide variety of physical and cognitive challenges, but the most applicable issues, in this case, are feeding problems and difficulty in gaining weight. Elijah has had various feeding devices since he first had his button at about three years old, but he is currently very satisfied with his MiniONE® Capsule non-balloon button. This button helps keep Elijah from pulling out his tube, which is definitely not much fun! Both Simon and Ezra share the typical AMT MiniONE® balloon type g-button that they now have after switching over from a PEG tubes that were initially put in at about nine months old. For our boys, we have found that the AMT products work the best because they really are nice and low profile while also helping to prevent granulation tissue.
At eight years old, Elijah has had his tube now for five years. Over that time, he has faced many challenges that range from severe seizure episodes to developmental challenges of all kinds, but those hardships don’t stop Elijah from doing the things that he truly loves. Elijah loves participating in races as an Angel Rider with Ainsley’s Angels, an activity that allows him to not only get out and see the world he loves, but he also gets the chance to spread the important message of inclusion. Elijah also loves to watch any activity that involves fast cars or motorcycles. When he is not working hard with his teachers or enjoying the outdoors, he loves to watch his favorite races on TV.
Ezra and Simon are almost two and three respectively, so needless to say that they are full of energy while they explore and discover the world. Like Elijah, they don’t let their complex medical problems stop them from enjoying life. Also like Elijah, both boys simply love to participate as Angel Riders with Ainsley’s Angels. As Ezra continues to work hard in his pursuit of walking, Simon provides his own style of non-stop examples and encouragement.
Every day these three young boys carry on their primary job of spreading unadulterated joy and potential. While their overall goals may be slightly different than most children, the message of inclusion that they carry will without a doubt make the world a better place. Their AMT feeding devices play no small part in allowing them to spread this message. Not only do they provide a great conversation starter, but more importantly, I strongly believe that these devices help give them the strength that they need to make better tomorrows a reality for so many. Although none of our boys have the ability to speak, their energy and strength communicate their appreciation for their AMT buttons very clearly.