Jessica first became extremely ill in 2018, when her dad Rory, was dying of the same rare genetic condition, a form of ectodermal dysplasia (NFKBIA), an immuno-deficiency disease. Jessica was born with the condition and they didn’t realise her father had it too until she was diagnosed aged three.
When Jessica became seriously ill in December 2018, Rory was being cared for at home. Louise, mum, was caring for Rory at home and also visiting Jessica in hospital. Rory told Louise to go and be with their daughter in Great Ormond Street Hospital (GOSH).
Rory was admitted to Hammersmith Hospital in November 2018 and Louise was visiting her husband and daughter in separate hospitals. As Rory deteriorated, Louise slept by his hospital bedside for four days. He died on 22 December 2018 at 7am. By 11.30am Louise was back at GOSH at Jessica’s bedside and told her that evening that her dad had died.
Rainbow Trust Family Support Worker Vilja began supporting the family two weeks after Jessica’s dad died.
“The journey for this family has been fraught with worry, continued ups downs and grief” - Family Support Worker Vilja
Jessica’s time in hospital was incredibly hard for the whole family. She had been living with Louise in one room in GOSH for three years, they believe she was one of the patients who spent the longest amount of time there.
During this time, Alfie, Jessica’s brother aged 13, had to live with his maternal grandparents, Marion and Barry. Alfie had recently been diagnosed with autism and struggled with behavioural issues following his dad’s death.
Jessica underwent various treatments and interventions to fight numerous infections. She died in October 2021, aged eight, of the same condition as her father.
“When Jessica was dying, Vilja spent five days at the hospital supporting everyone. She took Alfie to the park, would go and get food for us and would chat to Alfie about everything.” mum, Louise.
