Joshua’s Story

Support from WellChild at home.

Josh was born 14 weeks early and spent the first four months of his life in the Neonatal Intensive Care Unit (NICU). When he was finally discharged, the family were only home for three days before they were rushed back in as Josh had stopped breathing. Joshua had a nissen fundoplication in an attempt to stop these life threatening apneas.

However, Josh now stopped breathing when he was asleep and so the family were transferred to specialist Dr David Thomas.

Joshua in NICU

We spent the first 10 months of Joshua’s life in hospital, and most of this in an intensive care unit. As we also have a five year old, this meant splitting the family in two, I stayed with Josh, and Phil stayed with Erin. We had no family life whatsoever. We couldn’t plan from one week to the next let alone beyond that.

Joshua's mum, Emma

Support from WellChild

Josh has reached a period of relative stability and has had no emergency admissions to hospital in nearly two years. The family are supported by Long Term Ventilation Nurse Rachel, funded by WellChild. Josh’s parents have had to increase his ventilation settings a number of times. This has all taken place within the home environment, supported by WellChild Nurse Rachel.

Joshua’s mum, Emma is now an active member of the WellChild Family Tree group where she both gives and receives support. Emma is also a WellChild Parent Ambassador and helps to raise awareness of our work supporting seriously ill children and their families.

Joshua in his wheelchair using breathing equipment
Joshua with WellChild Nurse Rachel
Joshua on a day trip
Joshua eating ice cream