Family of Hove four-year-old with rare muscle condition ‘overwhelmed’ by successful crowdfunder
An online crowdfunder has raised thousands of pounds for a Hove four-year-old who was diagnosed with a muscle-wasting condition.
More than £5,000 has been raised for Zeppelin Petre-Wright, from Clarendon Road, who was diagnosed with Duchenne Muscular Dystrophy (DMD) in September this year.
The fundraiser was started by Zep’s mother, Emma Petre, with a view to improving his quality of life.
“We’re overwhelmed by the kindness and generosity of people. This money will help us to provide Zep with all the things he needs as his condition progresses,” she said.
“This money is an amazing gift from people who want to help us and we don’t take it for granted for a second.
“People work so hard to earn a living and the fact that they would share that hard earned money with us makes us feel very loved and supported.”
Emma will be taking part in a 10k run alongside family and friends in May 2020 and is raising money through sponsorship.
She said: “I’m nervous as I’m starting from scratch with training but it’s worth it 1,000 times over if it helps Zeppelin.
“The regular running is really helping me stay strong and in a good head space.”
Emma said that Zep’s diagnosis took time and was made formal in August this year after Zep was referred to the Royal Alexandra Children’s Hospital, Brighton.
“He was always late reaching most of his developmental milestones, has always fallen over a lot, and struggled to keep up with his peers so my gut said something was up.”
“At his appointment we quickly realised it could be more serious than we thought. He was immediately booked for blood tests which showed key signifiers for muscular dystrophy.” she said.
The family will need to move house in the next two years to adapt their home to Zep’s needs.
This, says Emma, is the ‘first hurdle’ which she says is ‘overwhelmingly expensive’.
Any funds that aren’t used to adapt the family home and provide care for Zep will be donated to Duchenne UK- a charity funding research into a cure for conditions like Zep’s.
DMD is a degenerative muscle wasting disease which mainly affects boys and manifests during early childhood.
The condition can affect motor skills and impairs the ability to walk, eat, and breathe later in life.
“For a parent, there is no pain like the pain which comes with a diagnosis like this.
“We hope for a cure with everything that we have, but in the meantime we just want to make Zep’s life wonderful,” Emma said.
The Go Fund Me page for Zep and his family can be found here.
For more information about the work of Duchenne UK visit its website here.