Paul's Story

Paul is a proud Dad of two beautiful children – Naomi was born in 1996 and her younger brother Oliver. He runs his own business and is active in his local community. When Naomi was born life suddenly got a lot more complicated for Paul and his wife Ruth. Their new daughter was diagnosed with a life limiting condition called Partial Trisomy 13, statistically suggesting she would die within a year. Naomi is still very much with us, however, obviously a fighter for life & confounding the statistics! As she has got older she has needed an increasing list of medication to manage her condition. Naomi has a tracheostomy to aid her breathing and is ventilated overnight so requires constant care from her parents. When Paul finishes a day’s work he needs to be on hand to help his wife with Naomi’s care. This means that quality father and son time with Oliver can be hard to come by, just taking him out for a run along the beach or a swim is hard to do.

Being able pop out for a coffee with Ruth his wife, or having a game of tennis with his brother is a distant memory for Paul. Any leisure time needs to be planned in advance so that they can be sure Naomi’s complex needs will be met, they can’t just get a babysitter when they feel like a night out like most couples. This is where the Jessie May service comes in. Paul says that we are the only support service they have that provides a sufficient level of care for Naomi to give them a much-needed break. Life did get a lot more complicated when Naomi was born, but her parents say that knowing her is a real privilege and support from Jessie May enables them to make the very best of the time they have.