Josh had been in hospital from birth and his biological mum was unable to care for him. He waited for foster carers for another 2 months on my ward, but none could be found. Josh was born with bilateral club feet, he had a gastrostomy and needed oxygen. He also had poor vision, was very floppy, and his hearing was in doubt.
He was the most beautiful little child I had ever seen. I took him home with me (legally!) and initially fostered him. Not long after, I legally became his mum. It's the best decision I ever made.
Today he toddles about, feeds himself (as the g tube is long gone) and wears the cutest ever glasses. I am immensely proud of him. He has a few words and pretty severe learning difficulties. He has recently been diagnosed with Autism.
I adore him!
I moved off the ward I worked on and am now a children's community nurse, specialising in complex care. Josh has changed my life.
I hope that any parents reading this will feel they can ask any one of us anything. We have been there. We can give info and support.
Josh is currently taking part in the clinical trials, taking place in Utah, USA. We are hopeful that treatments will one day be found. I am proud that Josh represents the U.K . Any information we get I will gladly bring back from Utah with us.
To all families living with this condition, I say we may be small in number but we are mighty in voice and support.