Jana’s story (born 2008)

Jana is the second of our three daughters. She was born on November 6th, in 2008 after 39 weeks of pregnancy. She weighed 2,690 kg and was 47 cm long. It was a normal delivery, but we had breastfeeding problems, so we opted for formula feeding. From the beginning we suspected that something was happening to Jana: she cried when we picked her up, she didn’t look healthy and she wasn’t growing properly. We consulted with several pediatricians and they all said it seemed to be something genetic, but they did not know exactly what it was.

In the summer of 2010 Jana suffered his first seizure. She was five days in the ICU, where she had two more episodes. She was diagnosed with Epilepsy, ADHD and Growth Retardation. We were sent to the Early Learning Center where Dra. Ana Roche dismissed the diagnosis of Epilepsy and ADHD, retired the medication (Valproate) and referred us to a specialized center. From 2010 to 2012 Jana had 8 seizures, the longest lasted 2 minutes, and all were related with febrile or gastrointestinal processes. Since 2012 there hadn’t been any more episodes.

In 2014 she was diagnosed with Syndrome Nicolaide Baraitser at the University Hospital Vall d’Hebron in Barcelona, by doctors Miguel del Campo and Ana Maria Cueto. Jana currently goes to an ordinary Public School, where she receives tutoring. Her language is improving and she’s being able to build longer and more complex sentences. Besides her school day, Jana is doing other activities such as Dancing and Basketball. She also works weekly with a Speech Therapist and a Psychologist at the centre IDAPP.

Jana is a happy, persistent, feisty, sweet and extremely affectionate child. Definitely an Extraordinary Little Person.