Terminally ill children in isolation need you

When Holly’s son Oliver was born at their local hospital, he was immediately rushed to Royal Manchester Children’s Hospital to have emergency surgery at just one day old.

Their first four weeks in Newborn Intensive Care were overwhelming for her and her husband, Dominic. Holly says: “Every single day it felt like we received more bad news, another thing wrong with Oliver. Another diagnosis to get to grips with and another specialist consultant to add to the list. We were completely consumed, overwhelmed and in shock.”

Oliver was diagnosed with a rare condition where you have a collection of birth defects called VACTERL. Each letter stands for a different area where a defect can be present and Oliver has five of the seven defects.

The most complex treatment is for his life-threatening kidney disease. His remarkable renal team kept him off haemodialysis (a procedure where the blood is pumped into a machine that filters it before being returned to the body) for two years, with an ever-changing combination of medicines, special feeds, tube feeding and fluid management.

Oliver’s condition is incredibly complex and means he has considerable ongoing health care needs and his mobility is affected. Oliver has 14 consultants and a further 23 professionals involved in his care.

Marlene has been the family’s Rainbow Trust Family Support Worker for three years now.

Marlene has been a Family Support Worker with Rainbow Trust for 19 years. During this time she has helped hundreds of children, parents and their wider families who have been affected by serious childhood illness, in many ways. Each and every family we support is different and their needs evolve over time, but some things are true for everyone who childhood illness touches: when a child is diagnosed with a life-threatening or serious illness everything changes. The pressure on the parents and the brothers and sisters of the seriously ill child is immense and dealing with it can be totally overwhelming. The experience could be utterly traumatic for the entire family.

Holly says: “For me, it’s the hard to describe, intangible things Marlene does that make the most difference, especially to my own mental wellbeing. Being able to talk openly and honestly to Marlene gives me an ‘outlet’ – a way of venting and processing everything.”

The most significant practical thing Marlene has supported Oliver’s family with is hospital transport. Holly and Dominic were both struggling to balance their part time jobs, getting Oliver’s six-year-old brother, Thomas, to and from school and driving to Manchester – a four hour round trip - three times a week.

This was exacerbated by the pandemic as a lot of their support stopped. Rainbow Trust put the relevant COVID-19 measures in place and Marlene started to take them to Manchester once a week. This has made a difference not only on a practical level, but also a financial and emotional level to the family.

Marlene also provides sibling support to Thomas, who needs dedicated time and attention.

If you can help this Christmas please donate today so more families like Oliver’s can benefit from this invaluable support. To some families the help of a Family Support Worker like Marlene is a lifeline.

Please accept my warmest wishes for a peaceful and happy Christmas.

Links:

• https://www.rainbowtrust.org.uk/