Netball event helps little boy from Seaford with ultra-rare condition
A charity netball tournament last weekend was in aid of a little boy 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.
Lizze writes: “The diagnosis of WAGR syndrome when it is your child comes with a whole range of emotions – shock and disbelief, anger, sorrow, guilt and fear of the unknown, especially when you are told it is a one in one million odds to happen to your child.”
Seaford Netball Club hosted the charity event at the University of Brighton’s outdoor courts in Village Way, Brighton, on Saturday.
More than 100 women took 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 was 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 was 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.
The tournament raised £2,188.