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Tuesday, 03 February 2015
Kathryn Kay visited the Girls’ Division during morning Assembly to talk to pupils about Phelan-McDermid Syndrome, or PMS. Kathryn and her husband Andrew helped to found PMSF UK, the UK branch of the Phelan-McDermid Syndrome Foundation, after becoming involved with PMSF International when their first son Charlie was diagnosed in July 2010.
PMS is a rare genetic disorder caused by the loss of the terminal segment of chromosome 22. It is also known as chromosome 22q13.3 deletion, and affects the transfer of messages in the brain which often causes developmental delay. Individuals with PMS often do not develop functional language and can have autism-spectrum disorders. Some also experience low muscle-tone which may require the use of a wheelchair.
She talked to the girls about what PMS is and explained that at the time of Charlie’s diagnosis there was no support system in the UK, only the International charity. With the help of a grant from Genes for Genes, PMSF UK was set up, and can now provide support for other UK families as well as raising awareness and the profile of PMS. PMSF UK is already planning family days for meeting and sharing information, and hopes to raise enough funds to provide therapy for two families each year.
In order to help with the fundraising efforts, the Girls’ Division will be holding two events on the last day of term. The first is a Pancake Café in the Food Technology Department, where pupils can purchase pancakes with a variety of toppings during morning break and lunchtime.
The second event is a Pancake Race! The action will take place in the Gym, involve a variety of challenges, and prizes for the winners. Kathryn launched this event during assembly, and invited girls to sign up in teams of four for the Lower School and Upper School competitions.
At the end of the Assembly, Kathryn thanked the girls for listening and showed a video of Charlie, who signed ‘thank you’ to the girls as well.
Hearing about the Kay family’s personal experiences with PMS and learning more about the effects of the disorder has certainly inspired the girls to join in the fun to support the charity in a couple of weeks’ time.
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