Kind heart of nurse who adopted boy who can’t smile

Sarah Ruame with Joshua. Picture: Ross Parry Agency

Sarah Ruame with Joshua. Picture: Ross Parry Agency

  • Congenital MD (CMD) is rare, affecting about 1 in 50,000 babies
  • First symptoms are poor head control and weak muscles, which make the baby seem floppy
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A YOUNG boy with one of the world’s rarest conditions meaning he cannot smile is being adopted by the nurse who cared for him.

Joshua Burdall suffers from Congenital Myotonic Dystrophy, a life limiting disease that affects muscle function and has left him severely disabled.

Sarah and her family. Picture: Ross Parry Agency

Sarah and her family. Picture: Ross Parry Agency

The three-year-old lived the first five months of his life at Hull Royal Infirmary due to his mother being unable to take care of him, herself suffering from the adult form of the disease.

Because of his condition repeated attempts to find a foster carer failed. He had never lived anywhere else in his short life and his official address was the hospital.

But Joshua’s story took a turn for the best when paediatric nurse, Sarah Ruane, 51, made the brave decision to take him home - leaving social workers moved to tears.

She is now appealing for help to send him for the world’s first clinical trial to cure his rare condition.

We have all fallen in love with him. It is a nasty condition.

Sarah Ruane, nurse

Ms Ruane, who is in the process of adopting the youngster, said: “Joshua was my patient and was born on the maternity wing at Hull Royal Infirmary. After about six days I knew I wanted to take care of him. They were struggling to get foster carers for him and I could not watch it anymore. I went into his cubicle and looked at him. The social worker said ‘I don’t know what we are going to do’ and I said ‘I do, I’ll take him.’ She started crying and told her manager straight away.”

The mum-of-six, who has been a paediatric nurse for 32 years, decided to find Josh all the medical help possible and, with husband Alan, 43, the couple began caring for him.

Sarah said: “It was a split second decision. I came home and said to my three grown up children that there is a little boy at work and they are struggling to find a home for him. They said ‘why don’t you bring him here?’ and I said ‘It’s funny you should say that.’ Two weeks later he was moved in.

“We have all fallen in love with him. It is a nasty, progressive, awful condition. It is one of the worst conditions that I have come across.”

Sarah, who now works as a children’s community nurse after leaving HRI in November 2014, worked extensively researching and asking doctors for help in trying to find a cure for Joshua before she finally got a breakthrough.

Utah University were looking for 65 children from around the world to take part in the very first clinical programme to develop a new drug for children with CMD.

After endless emails she finally got an email back saying that they would be happy for Joshua to take part in the clinical trials.

Now Joshua is the only child in the UK to take part in this programme and the family hope that one day it will lead to a cure.

Sarah added: “We are consumed with helping him. It’s funny how dependant on Josh I am now. He is a very happy little boy. He loves Peppa Pig and he is a total joy.

“He is weak and he can’t walk very far. One of the most difficult things for him is that it affects his facial expression.

“Doctors thought he wouldn’t make a year. On his third birthday he got up and walked. It was a miracle in itself. When this came up in America I knew I needed to find out how to save him.”

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