When Louie was diagnosed at 10 days old with a genetic condition, CD40 ligand deficiency, which only affects males, family life changed forever for Louie, his parents Rebecca and Paul and Louie’s older sister Iona, aged four.
At just seven months old Louie was admitted to the Great North Children’s Hospital in Newcastle in February 2024, where he underwent a stem cell transplant with stem cells donated from his dad, Paul.
Within the first week of Louie’s hospital stay, Rebecca and Paul were introduced to Family Support Worker Shelly. Before Shelly stepped in, Rebecca and Paul were forced apart, juggling taking it in turns to stay with Louie in hospital in Newcastle and looking after their daughter, Louie’s sister Iona at their home three hours away.
As Louie’s condition required constant care, Rebecca and Paul faced the overwhelming task of juggling hospital stays, their four-year-old daughter Iona’s care, and their own mental well-being.
Before Rainbow Trust, Rebecca and Paul were taking it in turns to be with Louie in hospital. Rebecca would stay in hospital with Louie from Monday to Thursday and then swap with Paul to takeover from Friday to Sunday.
Without Family Support Worker Shelly, they would not have had quality time together while Louie was in hospital.
Crucially, Rebecca and Paul trusted Shelly to stay by Louie’s hospital bedside while they spent some time together.
"We spent nine weeks in hospital in complete isolation, because of the risk of infection during Louie’s chemotherapy. Some days I couldn’t even leave the room, it was really hard mentally, but you just have to get through it. Shelly’s support has had a positive impact on our mental health by allowing us that time out. It was so intense, 24-7."
"We instantly trusted Rainbow Trust Family Support Worker Shelly and were happy to leave Louie with her for that amount of time."
"His little face used to light up when Shelly came into the room: he loves Shelly. I think he liked the nurses, but obviously he was worried that they were going to do something to him. But obviously, because he was a baby, he didn't really understand, but he did definitely recognise Shelly."
"It was a struggle to get any sleep so we swapped over every three days. Before Rainbow Trust we were like ships in the night. Paul and I wouldn’t have been able to have a break together. Some weeks I wouldn’t have had a break at all if it wasn’t for Shelly and Rainbow Trust. I wouldn’t have been able to leave the hospital room all day.
"Without Rainbow Trust we wouldn’t have been able to go out and do normal things like get a coffee. Things you take for granted."
There are so many families like Louie's, that may be feeling so helplessly alone and desperate, who need this specialist support. Please donate today to help us support more families like Louie's.
Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone.
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