Help take the sting out of Eddie's Problems
Edward James McDonald “ Eddie” was born 11th Dec 2017. Eddie has been diagnosed with Pontocerebellar Hypoplasia type 4, a rare neurodegenerative disorder and the only case of Pontocerebellar Hypoplasia in Tasmania.
Eddie is non-verbal and has motor impairments (he is fed through a gastric tube and cannot use his hands). He will never walk and so a wheelchair is a big part of his life. As he gets older, and heavier, he will need to stay in his chair whilst travelling as he will become too big to lift in and out of a car seat. As such, his mother (a single parent) will need a specially modified vehicle with a wheelchair hoist.
Eddie's Grandfather, Colin Dean, is a keen Vespa fan, and has started the initiative, "Ride for Eddie". With inspiration from Vespa (which means wasp in Italian), a group of passionate fundraisers will be riding around Tasmania in November 2021 on Vespas, wrapped in yellow to look like wasps. The aim will be to drive awareness of this very rare condition and raise funds for a van for Eddie's family.
"Ride for Eddie" was launched on 8th April 2021 and there will be events held at various times throughout the year featuring the Vespas in the lead up to the main ride in November. Popular Tasmanian singing group CROON will perform pop-up concerts at some of these locations.
Variety Tasmania has partnered with "Ride for Eddie" in order to assist this community fundraising effort and help give Eddie a Fair-Go. You can help Eddie by donating today. All donations over $2 are tax-deductible.
Help take the sting out of living with PCH4 and give Eddie the chance of having a full life. Head to Ride for Eddie