I can finally grow! MCT - my chance for normality
I'm Paul, a 2.5-year-old from the Stuttgart region. I belong to a unique group of about ten children in Germany who share something very special – we have a rare condition related to the KIF11 gene.
What is KIF11
KIF11? Never heard of it? Let me explain: I have a mutation on the KIF11 gene. I was born with primary lymphoedema in both feet. My parents soon discovered that I also needed glasses because I am very short-sighted. Some KIF11 children are already born blind or nearly blind. The limitations of the eyes and the lymphatic system are typical symptoms, along with a small head. When I was one year old, I started to feel sick more and more often and put on weight more and more heavily. Because of the rarity, even doctors often don't really know what to do.
Fortunately, I was quickly diagnosed with intestinal lymphangiectasia with protein loss (often called Waldmann syndrome) - a very rare fat utilisation disorder. For my parents, this was another complete change in everyday life.
For me, the MCT diet means that I have the chance to develop properly and later be able to lead as normal and independent a life as possible.
Cooking tips with MCT fats
The most important information summarized briefly:
- Half a teaspoon of MCT oil is approximately 1 g/ml.
- One teaspoon of MCT oil is approximately 3 g/ml.
- One tablespoon of MCT oil is approximately 6 g/ml.
- MCT margarine is ideal for spreading on bread as well as for sautéing and baking.
- MCT oil can be used for salad preparation and for gentle frying at low temperatures (approximately 150°C).
- Do not keep MCT fats warm for too long, heat them too hot, or reheat them (in the microwave) as this could result in a bitter taste.