'Atlantic' challenge to fund Bristol toddler's specialised treatment

The family of a toddler with a rare genetic condition is launching a "virtual Atlantic" challenge to raise money for treatment.

Two-year-old Oakley Moffatt, who lives in Bristol, has spinal muscular atrophy and needs specialised physiotherapy.

People are being asked to walk, row, cycle or ski "across the Atlantic" to help contribute to a total of £50,000.

"The next two years are the most important in his development," his mum Amy Moffatt said.

Mrs Moffatt said her son was a determined, courageous, fun and happy little boy, who "brings a smile to everyone he meets".

"We don't know what the future holds," she said, "but step-taking is the first goal and we're hopeful Oakley will learn to walk".

Oakley is a wheelchair-user but thanks to many hours of rigorous physiotherapy he can now stand independently.

He is starting a new course of intensive and very specialised physiotherapy in September with the American NAPA (Neurological and Physical Abilitation Center), which has opened a unit in London.

The cost for this treatment is £5,865 and roughly equivalent to the distance across the Atlantic from Oakley's home in north Bristol to the founding NAPA centre in Boston - 5,100 km (3,100 miles).

The fundraising event on Sunday is being launched by his father Nick Moffatt, and will kick off with a team marathon at Bristol Grammar School and volunteers are being invited to join in.

Other forthcoming expenses will include specialist therapies and an adapted Motability van - with the family hoping to raise around £50,000 by June of next year.

"Our dream has been to get Oakley to NAPA," said Mrs Moffatt.

"We've met children in the US and Canada who've had this unique treatment and they've shown phenomenal progress.

"We know that physiotherapy plays the biggest part in development and fighting against the muscle deterioration brought on by this condition.

"It's a gateway to independence. We would love to see Oakley run into the sea, pick up the sand, climb up the steps to a slide, or even run up and down the supermarket aisle."

There is no cure for the muscle-wasting disease, also known as SMA, but drugs and very specific therapies can help manage the condition and improve outcomes drastically.

However, these intensive therapies and much of the equipment, such as supportive devices known as orthotics, are not available on the NHS.

The Moffatt family already spend £850 a month on physiotherapy and the orthotics cost thousands of pounds but could potentially reduce the chance of Oakley needing major surgery on his spine and hips in the future.

Oakley's family is being supported by the children's charity, Tree of Hope, through which donations can be made.

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