We will lose little had Edmund so won’t be lonely

May agreed with her husband and adds: “Anya and Molly were already incredibly close. They barely left each other’s side and the thought of Anya losing her sister was just too much. Of course we knew another baby would never compensate for losing Molly – it couldn’t, but we prayed it would help us all have something to feel happy about.”

Tests after Molly’s diagnosis showed both parents were carriers of the condition and doctors warned them that any child conceived stood a 25% chance of also having SMA.

May says: “It made the question of having another baby even harder. It was the most horrific time.

“No parent wants to discover their child has a terminal illness let alone that they are risking another child facing the same terrible fate.”

The couple decided to go ahead – with one caveat: if tests showed their unborn baby had SMA, May would have a termination. When May discovered she was pregnant, in April 2014, she was in a state of turmoil.

May says: “We were in an agonising position whereby not only could we lose Molly, but we may have to abort our unborn baby and face the very real possibility of losing two children in the space of a year.

“Those weeks of waiting for results were the hardest of our lives.

“We didn’t tell a soul I was pregnant as we had no idea what the future held.”

May was 13 weeks pregnant when they found out they were having a boy.

She says: “It was just so hard as now the baby already had the start of a personality and it would be the first grandson for the family.” The next day a genetic test showed their baby boy didn’t have SMA.

Fighting back tears, she recalls: “It was a day of mixed feelings. We were obviously delighted that our baby was okay but we were also praying Molly would still be with us to meet her little brother.

“Molly was getting steadily weaker. She needed to be carried everywhere as she was just so floppy and couldn’t even sit up in a standard buggy without slipping through the straps.”

Despite the odds stacked against her, Molly was there when Edmund, now three, was born in December 2014.

May recalls: “It was a moment we

May says: “Nobody has been negative apart from a father of another girl with SMA at a conference who said, ‘I think it’s really selfish to have another baby when you have a child with SMA.’

“He then realised I was pregnant and was very embarrassed.

“Whether people think what we’ve done is right or wrong, no one can comment or judge until they have been in our shoes. We did what we thought was right for Anya.”

There are no statistics for children over the age of two with SMA Type 1, leaving May and Julian in a constant state of limbo, as Molly is now four.

May says: “We know in many ways we are very lucky. Molly has defied all the doctors’ expectations and brings us so much happiness.

“She’s an inspiration to us and is always smiling. She loves nothing more than playing with jigsaws.

“Because her arms are so weak, she indicates the pieces for us to pick up and we put them in the right place.

“But we also know that one day we will lose her – it could be tomorrow, it could be next week, it might not be for years, we just don’t know.

“We will never regret bringing Edmund into the world – he has made our family complete.

“Molly adores him and Anya also had an instant bond with him. They love playing outside together and chase each other about.

“It gives us some comfort knowing that when the time comes he and Anya will be there for one another and neither of them will ever feel alone in life.”