Jessie Nelson ‘furious’ after MPs argue over investigation into muscle condition affecting her twins

Speaking about the controversy she was involved in, Nelson said she was disappointed the issue was not being treated with more urgency.

“I can’t tell you how heartbreaking it is to know that my children’s lives would have looked completely different,” she said, fighting back tears.

“Now they could walk, they didn’t have to be on ventilators.

“I have to give meds every four hours. I have to turn them every two hours, because they can’t do it themselves. I have to make sure they don’t choke… because this disease has damaged their muscles by swallowing.”

“To know that there are people who make this decision to make children suffer … I have no words.”

The singer said she showed Hodgson a video after the debate, of two sisters living with SMA – one who received treatment and one who didn’t.

“One is in a wheelchair, the other is running and pulling her sister.”

Nelson Hodgson said she was surprised by the video, admitting she didn’t understand the impact of first aid.

“How can the health minister stand in parliament and argue why this shouldn’t be rolled out across the UK when you don’t even know how life-changing this treatment is?” Nelson asked.

The charity Muscular Dystrophy UK welcomed Monday’s debate and said it was “encouraging and motivating to hear so many MPs talking about SMA newborn screening”.

However, he added, “We will continue to push for the UK government to introduce screening in every part of the UK. No more postcode lottery.”