Wolf-Hirschhorn syndrome (WHS) is an extremely rare chromosomal disorder caused by a partial deletion of the short arm of chromosome 4. Major symptoms may include a characteristic facial appearance, developmental delays, intellectual disability, hypotonia and seizures. Severity of the symptoms varies depending on the size of the chromosome deletion.
First-Step therapy treated many children with WHS and helped them to reach their potential. Below you can read experiences of some with WHS.
THE STORY OF GIOVANNI
Giovanni was born with Wolf-Hirschhorn syndrome, which presented itself as extensive developmental and language delays. Giovanni first met the First-Step team at the age of 2 and a half. He was not able to crawl or walk; he only shuffled on his bottom and spoke very few words. He ate only soft food and in very small amounts. Following several intensive therapy processes, Giovanni started crawling, then walking, and today he is running on his own. He eats solid food and with has appetite; he speaks fluently, communicates very well, and attends nursery school with children of his age – and functions like a regular kid.
“When we met First Step, our little boy was 2 and a half years old, hypotonic and not even crawling. We put our trust in Shai and the First-Step people, their suggestions, and their methods. In May 2012, we went to Israel for the first time – and by September 2012 GioGio started walking. Now Giovanni is 4 and he is almost running. First-Step was a life-changing experience for him – and for us as parents too.” Camilla and Lelio Prandi
THE STORY OF BENEDIKT
Benedikt was born in June 2011 in Adliswil, Switzerland. He was diagnosed with Wolf-Hirschhorn syndrome. The family started a therapeutic process with First-Step when Beni was 2 years old. With the support of AEMO association, the family pursued their 4th therapeutic session in Tel Aviv, where the focus was on the standing function, improving his balance reflexes and communication.
Beni enjoyed the lessons especially the surfing ones where he had to learn how to respond, to move, to solve problems, and overcome obstacles and challenges.
“Pursuing the therapy in Tel Aviv provides optimal conditions. You get access to the whole First Step team of experts and the sessions are either held in very well equipped apartments, or just outdoors at the beach, or one of the many playgrounds. Being away from your routine life at home, ensures you can really focus on the therapy.” – Katja, Beni’s mother.