The Donna Louise Children’s Hospice provides a range of specialist care and support services for children with a shortened life expectancy and their families in Staffordshire and Cheshire. They provide this care and support based on their needs wherever and whenever they need it.
So often we fail to think about the impact a child’s illness can have on the whole family, who often themselves provide constant care around the clock. The Donna Louise Children’s Hospice overarching aim is to bring families a sense of normality, so often taken for granted by us all, to help them remember that they are parents first and foremost and carers second, which is sometimes forgotten or overlooked.
Four year old Daniel O’Sullivan was diagnosed with a very rare infantile form of Neonatal Marfan Syndrome and was given just 2 years to live. Marfan syndrome is a genetic disorder that affects the body’s connective tissue. Connective tissue holds all the body’s cells, organs and tissue together. It also plays an important role in helping the body grow and develop properly.
Daniel also has autism, is registered blind and, as a result of his first 2 years being spent in hospital, he has developmental delay and limited mobility. Daniel also has an enlarged aorta and his enlarged heart and curvature of his spine puts immense pressure on his lungs.
Thankfully, spinal surgery in late 2013 changed Daniel and his mum, Sarah’s life. Daniel had a spinal rod fitted, taking the pressure off his heart and lungs. Before surgery, Daniel had become very ill and withdrawn and couldn’t sit. After the surgery, Daniel could sit for the first time and even play with his toys.
Daniel needs round-the-clock care which puts a real strain on single Mum, Sarah. Daniel needs to be ventilated at night and due to his autism; he can become very anxious and wakes often. Every night Sarah is up numerous times tending to Daniel’s needs and ensuring he is comfortable, leaving her exhausted.
Since starting to use The Donna Louise Children’s Hospice for regular respite, Sarah says it was a life line and totally changed her life. She is able to switch off when Daniel stays at the hospice, knowing he is safe and well-cared for, and she can get a full and deep night’s sleep. Daniel also loves spending time at The Donna Louise, especially playing in the ball pit and the sensory room. The spacious building also allows Daniel plenty of room to move around in his walker and the one-to-one care he receives from the nurses is incredible.
Since his spinal surgery and since coming to the Hospice, Daniel has become a talkative and happy little boy and, thanks to The Donna Louise, Sarah gets some vitally needed rest and respite.
Since 2014, DM Thomas Foundation has provided The Donna Louise Children’s Hospice Trust funding totalling £11,924 and most recently, a grant of £1,323.