Sarah's Story


Sarah, born in 1996 has a condition called Retts Syndrome, which, among other difficulties, causes breathing problems including a tendency to hyperventilate or to stop breathing (apnoeia). She can be rushed into hospital every few months when she is difficult to resuscitate or when her epileptic seizures become uncontrollable. Sarah is in a wheelchair and has very limited movement – even if she has something in her eye there is nothing she can do about it herself until someone else notices she is uncomfortable. Her Mum finds it hard work caring for Sarah as she needs constant care and attention. The family have a fortnightly respite visit from Jessie May and Sarah’s Mum says that the first time a Jessie May nurse came to do a respite visit in their home it was an enormous relief. She felt she could trust the nurse to look after Sarah’s medical needs and she didn’t have to explain everything, it was the first time she could step back herself and have a bit of a break.

Sarah with her Mum