Pallister-Killian Syndrome

Phil's story - by Andrea Colasanti

(andrea@pk-syndrome.org)

from 2002 to 2007 - the elementary school & first sports


Phil started elementary school at the age of 7 and during the first year he was able to learn reading and writing and to solve simple problems with sums and subtractions. He has a limited learning support with a dedicated teacher for 10 hours a week.

He likes watching books and hearing fairy tales. He loves cartoons, drawing and playing with puppets, small plastic animals and LEGO or similar things.

He can eat almost the same food we have although he is quite energetic eater. He really loves chocolate and sweets. He has a very sweet tooth. He is a nice boy often happy and friendly .

To improve his muscle tone and his social life we pushed hard on sports and outdoor activities that Phil likes a lot.
At the age of 7 he can run as fast as "normal" 5 year old kid and he enjoys going on the slide or swings with the other kids. He can ride bike (but he gets tired very quickly) but he walks for hours.
Since he likes dogs we arranged the possibility of dog sitting in our neighborhood.
On February 2002 he enjoyed a swimming class. He liked it a lot and he was very committed to it but we had to stop it after 16 months for the continuous ear infections. To go on doing some sport he joined a Judo class in September 2003.
On may 2005 he run the S. G. Komen Breast Cancer Foundation’s Race for the Cure 5 km Marathon (he is the one wearing red) in less than one hour, mostly walking.

On June 2007, at the age of 11, Phil ended elementary school in a public school in Rome. He can read, even if he doesn’t like it very much. He prefers performing maths (sum, subtractions, multiplications) and playing chess.

He is fine and healthy.
His main problems are still the language and ear infections cured with ears ventilation tubes. On August 2007 he had a palate plastic surgery. He is still attending Speech Therapy mostly focused on improving the control of the lips and tongue. He never had seizures. Still no perfectly toilet trained.


Last update: 15 January 2012


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