The twins are supporting Jesy Nelson’s campaign for all babies to get tested for SMA at birth, after her twin daughters were diagnosed with what the singer described as the “most severe muscular disease”.
Nelson wants SMA to be part of an NHS blood test that is normally carried out at five days old, and currently tests for 10 other conditions.
Alex and Sam are backing her bid, as they believe if they had been given the test, it would have allowed them to progress further and their muscles would not have weakened as they have.
Sam said: “I don’t think there’ll ever be a cure for SMA, but having the treatments that are available as early as possible can be life-changing.”
Alex agreed, adding: “It’s another step to getting people that treatment as early as possible and making sure SMA doesn’t become something that does limit your life and it does ensure that the medicines allow you to live a fulfilling life.”
Meanwhile, Sarah thinks it is important for children to be diagnosed as early as possible, so that they can start treatment straight away.
She said: “I totally understand how she feels, as I don’t want to be a nurse or a carer, I just want to be a mum.
“It is really hard, but you just do whatever you can for your children.
“Be patient and things will be OK.”
