'Jesy's twins will help each other like we do now'

"Being a twin is a good thing, when you have something as difficult as SMA, to have someone next to you who knows exactly what you're going through."

Identical twins Sam and Alex Bolton, from Derby, were diagnosed with spinal muscular atrophy (SMA) type two, a muscle-weakening disease, when they were 18 months old.

The brothers said being twins helped them navigate life and they think it will be the same for the former Little Mix star Jesy Nelson's young twins, who have SMA type one.

Sam and Alex, now 20, said they would not let their disability get in the way of achieving their dreams and had ambitions of becoming the next Ant and Dec.

The NHS describes SMA as "a rare genetic condition that can cause muscle weakness". The NHS lists five types, with type two most people survive into adulthood.

Alex and Sam, from Littleover, were born seven weeks premature in 2006, but they were not diagnosed with SMA until they were 18 months old.

Their mum, Sarah Wilson, said her sons were not expected to live beyond seven years of age.

She said: "It was devastating, because you're grieving for the children you're not going to have.

"You have this expectation of everything your children are going to achieve and all of a sudden it felt like they weren't going to achieve anything."

Alex and Sam have surpassed every expectation and are now in their final year of a degree in film and TV production at the University of Derby.

The twins are already planning to start a master's degree and eventually want to work together in television.

Sarah, also from Littleover, said: "They never let SMA hold them back... they really are an inspiration to me."

Alex and Sam have never let the condition stop them from living life to the full.

Sam said: "It's taught me a lot of lessons in terms of my mindset and it's given me a lot of gratitude for what I do have, but it doesn't define me as the person that I am, it doesn't change my aspirations."

The brothers think Nelson's twins will support each other through their condition as they grow up.

Alex said: "What's good for us, and what will be good for Jesy's twins, is that one day they'll have an unspoken relationship, where they'll understand exactly how it feels."

Sam agreed, and said: "Unless you've lived it, it's hard to understand it, so having a sibling who can not only understand, but has literally lived it with you, seen the struggles and can support you with that, it's always really helpful to not feel as alone."

Alex wanted to reassure Nelson as she navigates her way through her twins' diagnosis.

"It will turn out OK and you will still have a very fulfilling life, your children will still have a very fulfilling life," he said.

The twins are supporting 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 added: "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."

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