Essex twin babies labelled ‘lazy’ by experts found to have cruel muscle condition

An Essex mum has described her “living nightmare” after she was told her twin sons had been diagnosed with a cruel muscle condition. Doctors revealed they were unlikely to live past the age of two without treatment.

Jenna Whyman and husband Steve, from Benfleet, first realised something was wrong when they spotted babies Raffa and Sibby were unable to lift their heads and seemed to have limited movement. Jenna, 36, told The Mirror that healthcare workers suggested the infants were “lazy” and that they would eventually catch up.

And after months of raising fears about the twins’ development, the couple were eventually told something was seriously wrong. The day before their first birthday, Jenna and Steve were told the boys had Spinal Muscular Atrophy (SMA) type 1. If left untreated, it meant they were unlikely to live past two-years-old.

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Jenna first became worried when the boys showed no signs of being able to lift their heads or roll over, but was repeatedly told not to worry. As a result, Raffa and Sibby lost vital time in their battle against the progressive condition, which causes muscle wasting and loss of movement.

“They had a rattly chest from birth, which we now know is a sign of SMA,” she told The Mirror. “Each time I’d raise that they’re not attempting to lift their head or roll over I was told ‘don’t worry, they’re twins, they’ll catch up in their own time.

“‘They’re boys, they’re probably just lazy.’ Now they’re unable to sit up and hold their heads up, while other children their age are starting to get on their feet and take their first steps.”

The Whyman family, who live in Benfleet

As time passed and the boys showed no sign of improvement, swimming instructor Jenna and warehouse manager Steve pushed for more answers. On one occasion, Jenna said, she was branded “neurotic” as she questioned why her sons were developing at a slower rate than other children their age. After a health visitor finally agreed that something was wrong, the twins were rushed for urgent tests – leading to the heart-breaking news they both had SMA1.

“I was googling and it kept coming up with cerebral palsy, up to that point I’d never heard of SMA,” Jenna said. “We were given a leaflet which said that babies with SMA type one don’t usually live beyond their second birthday. It was a complete shock, we were so emotional. I’m normally a positive person but I’m only human.”

The twins have undergone groundbreaking gene treatment, but face an uncertain future

The twins have undergone groundbreaking gene treatment, but face an uncertain future

They were referred to Great Ormond Street Hospital in London, where they learned of revolutionary treatments which could make a difference. Jenna added: “Historically you’d be told to take them home and love them, and they wouldn’t be here after two years. Even now with the treatment they’re on, there’s no data beyond the age of six, everything in their future is unknown.”

The boys have undergone gene therapy using a new drug named Zolgensma, branded the world’s most expensive drug because of its £1.7 million list price per dose. The twins require specialist cough assist equipment to help them clear their lungs – something children with SMA1 are otherwise unable to do.

Raffy and Siddy, who have SMA1

Raffy and Siddy, who have SMA1

It is likely both Raffa and Sibby, who turned one in April, will require wheelchairs for life. Jenna and Steve say that although the NHS care they have received since diagnosis has been “incredible”, they are struggling to meet the costs of physiotherapy and hydrotherapy and specialist equipment.

Their home also requires extensive modification to make it accessible for the twins, and they have launched a fundraising appeal – which has already collected more than £13,500.

Jenna said she hopes that by sharing her story, others in a similar situation will push for a diagnosis when they know something is wrong. And on the donations, she added: “It’s so overwhelming, as a family we’re so incredibly touched.”

Steve and Jenna have launched a fundraising appeal to help their sons' treatment

Steve and Jenna have launched a fundraising appeal to help their sons’ treatment

In the US, all children are screened for SMA. But Jenna said other parents of children with the condition have had to battle to find out what is wrong.

“I just hope that one person reads my story whose child is facing an SMA diagnosis and they push the doctors to take them seriously,” she said. “If it saves just one child it’ll be worth it.”

To support the family’s fundraising appeal, click here.

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