Jessica's Story

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.
Louise quote image

"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."

Louise, Jessica's mum

Rainbow Trust Family Support Worker Vilja supported Jessica in hospital, provided bereavement support for Alfie following the death of his dad and sister, through play therapy at GOSH, talking and attending Jessica's funeral.

Vilja attended Jessica’s funeral and after the service Alfie asked her to play football with him and his friends.

“There I was, a middle-aged woman in a dress running about playing football, but it was just what everyone needed. It was so lovely to see Alfie playing with his friends and I took a step back when he no longer needed me” said Vilja.

She gave Marion and Barry time to relax by taking Alfie out and helped to plan Jessica's funeral. She drove them to the hospice, sourced specialised support for Alfie, helped Louise to fill in applications for benefits and has been there for whatever the family needs whenever they need it.

She has supported the family throughout Jessica’s illness and continues providing bereavement support for Louise and Alfie following Jessica’s death.

“Vilja is fantastic with Alfie. She does crazy things with him for example Alfie went through a stage of loving litter picking and decided he wanted to make his own business. Litter trust was formed, she wrote the name on the back of a hi viz and helped him come up with a logo and business plan. Then there was the time he wanted to drive around looking for bad drivers and write down their number plates for Vilja to report them to the police. She must have had pages of number plates!” mum, Louise.

Alfie and Louise are now adjusting to life without Jessica and Rory.

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