Family’s fundraising efforts for boy with muscular dystrophy

The family of a young boy who was born with congenital muscular dystrophy have been organising a series of events in their local community to raise money for a hydrotherapy spa and appropriate modifications to the family home.

It is thought that young Stanley Newman, Essex, will require life-long physiotherapy to manage his incurable condition.

Above ground, the five-year-old is only able to move around with the aid of an electric wheelchair, but according to father, Rob Newman, young Stanley “comes alive” when he is in the water.

Rob Newman said: “Hydrotherapy is the best way to help children with Muscular Dystrophy. It negates the gravity – which is what makes us heavy – so he [Stanley] really comes alive in the water and can stand up in it.”

Friends and family members are trying to raise money for a £20,000 hydrotherapy spa, but Mr Newman has voiced concerns that more might be needed in order to fund improvements to the family home.

“At the moment [Stanley] can’t get around the garden – so we need to completely revamp it,” he said.

In recent months, the family have successfully raised £1,000 for their cause by organising a charity car wash at Clacton Fire Station – where Mr Newman works.

In coming weeks, celebrity footballers from the local area will be gearing up for a charity football match – which will feature young Stanley as man of the match, according to reports.

Mr Newman and others have also organised a family fun day, which will be attended by several performers including The Voice star Lydia Lucy.

Commenting, Mr Newman said: “One thing I’ve learnt is, above everything, it’s really important to be a family and forget the worries sometimes.

“We focus on the positive and making memories, because Stanley deserves that.”

At EnViva Paediatric Care, our experienced staff can provide complex nurse-managed homecare for babies, children and young people with a range of disabling conditions including muscular dystrophy. For more information about the services we provide, please contact us today.