A mum who adopted the ‘boy who can’t smile’ is appealing for support to fly him to America to continue his clinical trial.
Five-year-old Joshua Burdall suffers from Congenital Myotonic Dystrophy, a rare life- limiting disease that affects muscle function and has left him severely disabled.
Sarah Ruane, a community nurse, of Huggate, met Josh when he was three months old on the ward where she worked at Hull Royal Infirmary. His mother suffered from the adult form of the disease and was unable to care for him. She couldn’t bear to see him struggle to find a home so at five months old Sarah took Josh home.
Sarah said: “When I brought Josh home he was completely dependent on me, but I never realised I would end up being completely dependent on him. He has become my entire life. When I look at my career and everything I have done I think bringing Josh home will be my greatest thing.”
Since then Sarah has done all she can to help try find treatment and a cure for the “happy, little boy”.
She said one of the hardest things for him is he is unable to smile and people find it harder to communicate with him. Thankfully Sarah can see in his eyes when he smiles.
Sarah sucessfully applied for the first clinical programme to develop with CMD at Utah University, America.
Josh has been to Utah for the past three years which will everntually lead up to a drugs trial which could benefit all future sufferers of the condition and slow down the symptoms of the condition.
Although a cure may come too late for Josh, Sarah hopes the research will help others.
Sarah had been saving for the trip but the oportunity arose to buy a ‘chest vest’, a piece of medical equipment which will help him breathe, that couldn’t be missed.
Sarah says Josh doesn’t meet the criteria for funding as he hasn’t had three high dependency stays in hospital. The cost of the equipment is normally £8,000 but Sarah was able to purchase the chest vest from California for £3,500.
Despite this being an ‘absolute bargain’, it has wiped out the Utah fund.
The family are now hoping to raise £1,500 to go towards the trip in September.
Sarah, a mum-of-six, said: “I can raise the rest myself – it normally costs around £2,500 because we like to make a holiday out of it as Josh doesn’t get to go away often.
“The clinc pays for a three-night stay during the trial but the journey is exhausting for Josh,” said Sarah. Although Sarah had to be convinced by her partner Kevin to ask for support, more than £700 has already been donated to their ‘go fund me’ page.
Having met other parents of children with the condition, Sarah is one of the founding members of the CMMD Fight Fund which has raised £50,000 to go towards research – but it is not funds Josh will directly receive.
Sarah said: “Congential myotonic muscular dystrophy is a theif. It will rob Josh of his ability to talk, walk, swallow and breathe. It will steal his cognitive ability. When it has done all of that it will take his life.
“I will fight in any way I can to stop it. I hate that I have had to ask for help and I fear people thinking badly of me. But far more than that is my utter and total fear of Mysotonic dystrophy.”
To donate visit www.gofundme.com/help-josh-boy-breathe-easier.