Joe’s Story

Joseph was diagnosed in the days after his birth and his condition is due to birth asphyxia. He was not expected to live beyond two weeks in the first instance and was taken off a ventilator when he was a week old with the expectation that he would not live. 11 years later he is still here and has proved he has a firm desire to be in the world.

The severity of Joseph’s disabilities means that he requires 24-hour care; this would be impossible without assistance and support from many different agencies. He is treated at 4 different hospitals, sees a myriad of health professionals and is on over 15 regular medications. He has two younger brothers who are becoming increasingly skilled at helping us care for him. Joseph is fed through a peg and needs regular suctioning, oxygen and chest physio. He can only see bright lights but his hearing is unimpaired so enjoys music and singing. As he grows bigger, the physical side of looking after Joe becomes more significant. Washing, dressing and moving Joe all take a lot of time and are very physically demanding.

Support from WellChild

Diane, Joe’s WellChild Children’s Nurse, is able to provide support when Joe is particularly ill at home, liaise with his hospice and doctors, sort out issues with GP and be a link between the different care agencies who assist in caring for Joe. She has also been able to provide guidance about benefits and liaised with health and social services in Haringey.

Joe attends school 3 days a week when he is well and for the other two days is cared for at home. Lifeforce carers provide respite sessions twice a week bringing stimulating play into the home. Joe has been on lots of adventures out of school such as going up hills, on beaches and even cycled on the Tarka Trail. He has also visited Belgium!

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Diane, Joe’s WellChild Children’s Nurse, is able to provide support when Joe is particularly ill at home.

Anna & Andrew

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