After Louie's family were torn apart following his diagnosis, Family Support Worker Shelly began providing much-needed support in hospital for Louie and his parents.
Watch Louie's story:
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's parents Rebecca and Paul, and their daughter 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 Paul.
Within the first week of Louie’s hospital stay, Family Support Worker Shelly began supporting the family. Before this support began, Rebecca and Paul were forced apart, juggling stays with Louie in hospital in Newcastle, looking after Iona at their home three hours away, and their own mental well-being.
“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.”
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.
To give Rebecca and Paul some much-needed time together, Shelly stayed by Louie’s hospital bedside, played with Louie, giving him a distraction from the medical environment and procedures.
“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."
Shelly's support allowed Rebecca and Paul to have some quality time together during the long days in hospital, giving them a chance to have some respite and process together what was happening.
“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."
With your help Family Support Workers like Shelly can make the challenges that families living with childhood illness face that bit more manageable.
Please donate today to help us support more seriously ill children and their families just like Louie's.
