At Miracles, we aim to reach deep into the heart of communities to offer support to those families most in need. Many of the families referred to us have a child (or children) suffering with serious illness. Aside from the awful emotional impact of seeing your child suffer, the practical implications of hospital visits and ongoing medical care can be debilitating, often making work impossible for one or both parents.
The following is an account of just one of our many complex and heart-rending referral cases...
Baby X... diagnosed with junctional EB intermediate, for which there is no cure (treatment is based on supportive measures). He will require intensive care every day to change his dressings and to look after him. This diagnosis came as a surprise and will impact the family, as children with Epidermolysis Bullosa have a lot of ongoing complex health needs due to their condition. His mum was planning to move to Manchester where X was born, but now he has been diagnosed with this condition he will require ongoing support from the EB Team, so she has decided to stay in London. She lives in shared accommodation, and she will soon be homeless as the landlord does not have a licence to have a baby in a multi occupancy property (which isn’t suitable anyway, as X’s needs and the risk of infections mean he cannot share a bathroom/kitchen etc). X’s mum has her family in Manchester and is very isolated in London with limited support. His father has not engaged with X and has not provided support to his mum and the parents live separately.
Please help us provide essential support to more families like this one.
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