Netball tournament to help little boy with ultra-rare genetic condition
A charity netball tournament this weekend will help a little boy from Sussex who is suffering from a desperately rare condition.
Four-year-old George Pullen, from Seaford, was born with WAGR syndrome, a genetic condition affecting his eyes, kidneys, brain and genitalia.
It is ultra-rare. There are only around 350 confirmed cases in the world and people with this condition have a lifetime of appointments, operations, worries and fears.
Seaford Netball Club is hosting the charity event at the University of Brighton’s outdoor courts in Village Way, Brighton (Falmer Campus), from 9.30am-3pm on Saturday, May 11.
More than 100 women from across Sussex will be taking part, raising money for and raising awareness of the IWSA (Institute of Wagr Syndrome Association) and a local special needs charity the DSSNG (Down’s Syndrome and Special Needs Group) based in Seaford.
They help George and provide private speech therapy for him since he is non-verbal. The objective of the tournament is to raise money to help pay for speech therapy for families who cannot afford to pay privately. The NHS support for these children is limited now due to budget cuts for special needs.
The theme of the event will be zebras. George and others with WAGR syndrome are affectionately called zebras - there are no two such animals in the world with the same stripes and, just like zebras, everyone with WAGR syndrome is unique.
Sussex Police has donated £500 to the Seaford Down’s Syndrome and Special Needs Group. A police representative will be presenting a cheque to open the event, which is being sponsored by Brighton-based People Force Recruitment.