The parents of a two-year-old Sydney boy born with no eyes are appealing to the community for financial help.
Northern Beaches couple, Fiona Gould and husband Stevie Innes have their sights set on a new vehicle to help transport their “miracle man”, Archie Innes, in his wheelchair, along with his special needs equipment.
In order to purchase the vehicle, Archie’s parents will be hosting a “fun, fundraising and fashion-filled” lawn bowling event at Harbord Bowling Club, Curl Curl on March 2, 2019 from 4pm, involving 54 teams of four, at a cost of $50 per person.
Archie lives with a rare disease called SOX2 anophthalmia syndrome, (abnormal development of the eyes), which affects one in 250,000 children worldwide.
Remarkably, Archie is the second recorded case of this specific mutation from SOX2 Syndrome in the world.
He has no sight or light perception and has several brain abnormalities which have caused developmental delays.
Archie has to be entirely peg-fed through his tummy due to silent aspiration – fluid leaking into the lungs – and also lives with a rare form of epilepsy and severe motor delays.
During his short life, Archie has been hospitalised on more than 15 occasions with various respiratory infections.
Yet despite these hardships, Archie’s mother describes her son as having a “gorgeous, contagious personality and smile”.
Fundraising teams will be challenged with picking a fun name and theme to compete for best-dressed and best fundraising prizes.
All participants will each receive a food and drink voucher for use at a food truck, and entry to the after party with live music and an auction.
Those who would prefer to cheer from the sidelines can purchase a social ticket for $25 each, which includes a food and drink voucher and after-party access.
To book a team in support of Archie and his parents, head here: https://harbordbowlingclub.com.au/fundraiser/.