Thank youOh my goodness it was a really emotional moment when Joe opened his quilt!!
he’s a cool little fella and doesn’t always let on if he’s happy with something, but he adores his quilt.
He carefully looked at every square and his card, naming every character, he’s sat on it all evening with his favourite toys and delightedly told his Dad about his new special quilt when he got home from work.
He’s ready for bed now snuggled under it!!
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BiographyJoe is a gorgeous, sunny, cheeky, fun loving little fella. He is a twin and adores his sister Jess.
They were born 10 weeks premature and Joe was just 2lb5oz. He was born with sepsis. He was ventilated which collapsed his lung and gave him two hernias, he got a hospital acquired infection, developed chronic lung disease, had a hole in the heart, had to be revived after his heart stopped during a ventilator change and he suffered a drug overdose. He had surgery for the hernias, one of which was an emergency.
After constant reflux and sickness even after weaning he got a gastronomy and later had a fundoplication with vagotomy and pyloroplasty to prevent sickness and increase digestion motility. The downside was after intense tube feeding as he was still tiny, he developed food aversion and was not interested or able to eat.
Joe was behind on all development milestones which was attributed to his stormy start to live and failure to thrive and just before his third birthday, he was diagnosed with Duchenne Muscular Dystrophy, a terminal, progressive, debilitating muscle wasting condition.
Joe is still able to walk around the house but relies on a wheelchair for any distance and we have a wheelchair accessible vehicle to travel around and lots of equipment to support bathing, and physiotherapy routines. Joe has global development delay and autism and attends a fabulous special school which supports his mobility, feeding challenges and development delay.
He’s a happy little boy, adored by his family.
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