There are more than 50,000 children and young people in the UK who are expected to have short lives and the number is rising. These children have complex and unpredictable health conditions and rely on qualified children’s nurses with the right skills to provide palliative care and symptom management. Yet there is currently a shortage of children’s palliative care nurses and this is already having a negative impact on the care provided to children and families.
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To be forced to watch one child slowly die is an unbearable pain no parent should ever have to experience. But to have two daughters diagnosed with a terminal condition seems an incredibly cruel twist of fate.
Amazingly Abida Ahmed, from Lockleaze, is battling through the horrific trauma; yet she manages to care for herself, her three other children, and even cooks for her friends and neighbours on a regular basis.
When her daughter Hadiya was six months old she was diagnosed with a rare brain condition called GA-1, which affected proteins in her body.