Two-year old Zachary and his parents live in Laval, Quebec, Canada.
He was born with a genetic disorder: Cornelia de Lange syndrome.
Many children with this kind of syndrome are tube fed, and so was Zachary since his second day of life. His family did a lot of research and finally decided to sign-up for NoTube’s Netcoaching program which started in March 2015. At this time, Zachary didn’t tolerate any food orally. During Netcoaching program, Zachary started to take interest in different kinds of food, discover them in a playful way, taste them and eventually eat larger amounts. Finally his nasogastric tube could be removed!
From the parents
We had incredible luck in meeting an angel on our journey who put us in contact with the family of a tube-fed girl, who was weaned thanks to NoTube. Our son, Zachary, was born in January 2013 with a rare genetic syndrome (Cornelia de Lange syndrome), which affects his intellectual development and his motor skills. He had been tube-fed sinc his second day of life, as he couldn’t suck. For a whole year, before we decided to take part in the Netcoaching program, we read an incredible amount about NoTube and joined a parents’ group on Facebook to read reviews from parents all over the world.
A few months before the program began, a PEG-tube was discussed for Zachary. When we asked other parents in the Facebook group about their experiences with those, they all encouraged us to try NoTube before we let Zachary undergo such a procedure. We didn’t need long to make the decision since we already knew in our heart and mind that we would take part in the NoTube program and that the PEG-tube would only have a minimal impact on his learning development.
We had been treated by occupational therapists for over two years, and had tried our best to wean our son from the “umbilical cord” he was fed through. Unfortunately, Zachary wasn’t that interested in food, despite the wide range of food which we offered him and the many creative attempts we made to awaken his interest in eating. We were desperate but still convinced that our son could learn to eat, so we took the first steps with NoTube to see if he could be weaned. 61 days later, when NoTube team officially confirmed him being tube free for real, we could still hardly believe it. We still felt “tube dependent”, although it was our greatest wish to get rid of it…. The weaning of a child is a complex process and the whole NoTube-team was of great support along the way; a way that was short and long at the same time! Today, it has been more than 3 months since Zachary began to eat, began to catch-up on his weight and he has flourished exponentially! The decision for NoTube was the best decision of our lives and it has brought lasting improvement to the quality of life of our son.