TWINS ARE DIAGNOSED WITH SMA

Jesy told girls may never walk, She joins calls for heel-prick test

- LUCY NEEDHAM Deputy Head of Showbiz

IN May, singer Jesy Nelson spoke of how blessed she felt to have welcomed her twin girls after a difficult pregnancy.

Now she has learned her trials were only just beginning, with the heartbreaking news that Ocean and Story have a rare, incurable genetic condition and may never walk.

They have spinal muscular atrophy, which weakens every muscle in the body and causes problems with breathing and swallowing.

In a video shared with fans, the former Little Mix singer said she is determined to fight, and hope, and do everything she can for her girls.

But fighting back tears as she opened her heart, she added: “I am grieving a life I thought I was going to have with my children.”

About one in 10,000 babies is born with SMA. One in 40 people carries a faulty gene which causes the condition.

If both parents are carriers, there is a 25% chance their child will have SMA.

Prior to 2019, babies with SMA type one often would not survive until their second birthday, and infants with the milder type two would never walk, facing life in a wheelchair as well as multiple surgeries and respiratory infections.

In the past five years, treatments have been approved for use on the NHS that can stop the disease. They need to be started within the first weeks, or even days, of life.

STRUGGLING

Babies in the UK are not tested for SMA, so for many the diagnosis comes too late.

Charity SMA UK wants the condition to be added to a blood spot test, done with a heel prick on newborn babies, that checks for 10 rare but serious conditions.

In her video, Jesy backed calls for the test, which she said “can literally save their legs, and so many parts of their body”.

She ended her video by listing signs to look for, which include floppiness in babies, bell-shaped bellies and rapid breathing.