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We frequently work with children who suffer from genetic disorders. Often the children have been treated by doctors who have only seen their medical condition once or twice in their careers, and the parents have been told that the child is not able to learn to eat. The scientific literature currently available supports this advice, many genetic disorders such as Noonan Syndrome or Cornelia de Lange Syndrome (CdLS) are suspected of causing swallowing difficulties and impaired olfactory sense. These syndromes cause the children to have characteristic appearances and often have severe medical problems, making oral food intake impossible at the beginning of their lives.

Tube free family - child tubeFrom 2009 to 2014, we were able to support 534 children on their journey towards sustaining themselves exclusively via oral eating and 123 of these children suffered from genetic syndromes: 11 children had Cornelia de Lange Syndrome (CdLS) and 8 children had Noonan Syndrome. Compared to other groups, these two groups are among the biggest worldwide which are researched on in terms of food intake. Noonan Syndrome still occurs rather frequently, the CdLS occurs less often.

But what is striking is this: despite their problems, both large and small, and the sometimes necessary surgeries and treatments, these children are able to learn to eat.

In one of our Eating Schools, we had a wonderful little patient who suffered from Noonan Syndrome. A lively little boy who soon was called “the mayor” by everyone. He knew how things worked, knew where to find everything and helped everyone as well as he could. He had never eaten anything in his entire life and he was frightened in the beginning. He considered anything that would come near his mouth as a possible danger.

During the Play Picnics, he was walking around, threw stuff all over the place and did not eat anything. A few days later, after having been treated by our EAT coaches and after a drastic reduction of his tube feeds, he started to eat orally. At first, he had Nutella, then yoghurt and soon also cookies. What had happened? The little boy was actually able to eat, he just did not know he could. And because he had never eaten anything in his whole life, he was also scared – above all scared to swallow.

Parents of children with genetic syndromes believe in their child. But sometimes it’s hard, since the doctors involved are usually still sceptical and consider the limits these children are bound to as more restricted than they actually are.

Play picnic in notube child tube

Therefore we would like to invite you to contact other parents via our Facebook groups who have participated with their child in one of our programs. Ask them if their child can eat, what the transition from enteral nutrition to oral eating and swallowing was like, which measures had to be taken in order to support their child in learning to eat and how they perceived the way in which our team had supported them during the whole process of learning to eat.

This way you will see that even children with a genetic syndromes can eat and that we are very happy to help you in taking this journey.

Peter Scheer