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By Nathalie Foppen One year has passed again, so it’s time for a new blog, today on World PTLS Awareness Day (March 8th)! Every year, of course, there are huge milestones for the now 14-year-old Jelle. But this year there were a few very strenuous ones. Home aloneLast year Jelle increasingly wanted to be home …
Every year on March 8 it’s World PTLS Awareness Day! A perfect moment to reflect on another great year for this Dutch family, in which both our kids, especially Jelle, experienced so many developments again. ‘Blown away’ is the best description for it. Leave me alone We have a 13-year-old adolescent in tha house! Healthy …
By Nathalie Foppen, Holland January 2010 – Wilhelmina Children’s Hospital in Utrecht, Holland “Your son has a genetic disorder. He has a bit too much gene in chromosome 17. Thus he has what they call the Potocki – Lupski syndrome”. You just gaze at the clinical geneticist and think: “What is he talking about?” Honest …
