FOR the first four years of Jack Nesbitt’s life, the family struggled without a diagnosis, knowing only that he was profoundly disabled.
Following an invitation to be part of the hundred thousand genomes project Jack was finally diagnosed with Aicardi-Goutieres syndrome: a rare genetic disease resulting from mutations in several genes. His immune system is constantly on high alert, fighting his own body, which has left him with brain damage.
Jack’s mum Tina, recalls:
“I had a normal pregnancy with Jack, we didn’t get any idea that anything could be an issue with him physically. Then he stopped feeding, he wasn’t smiling, and he was crying constantly. Every test came back with normal results, so we were sent home from hospital with a feeding tube.
“Jack’s pretty much like a newborn baby – he can’t hold his head up and he doesn’t talk. He is fed by a tube, but he’s got an amazing smile, and he loves watching other kids. He loves his big sister Sophie, and he’s got quite a wicked sense of humour.”
The family were referred to Francis House Children’s Hospice by their neurologist who explained that support would be available for the whole family.
Based in Manchester, Francis House provides care to children and young people with life-limiting conditions and support to their families. More than 550 families from across Greater Manchester receive respite care, sibling support, home care, end of life care and emotional and bereavement support.
Initially, Tina was apprehensive about going to a children’s hospice, thinking that there would be ‘lots of poorly children’ and ‘not a very happy place.’ After that first visit and seeing all the children playing and happy, her mind was instantly changed.
“We really did need some help. Francis House is a home from home and a really nice place to go to. Being given the news that Jack wouldn’t have very long with us, and trying to explain that to Sophie, who was only eight years old at the time, was quite a daunting thing. Francis House helped us with that.
“They have loads of experience in knowing what happens to siblings, and what they go through, so having their support and understanding is brilliant.”
Seasons is a group for the siblings of children that use the hospice. The three age groups meet once a month and have activities focused on play and fun but also encourage the brothers and sisters to talk about how they are feeling by providing one to one support in a safe environment.
Maira Williams, a nurse and member of the Seasons team explains:
“Siblings can feel very isolated, they can have a very tough time, watching their brother and sister being ill and their parents going to hospital. They need to be encouraged to step back from their caring role and go and have fun, at Francis House they can come and just be children.”
“So much of your attention is on the child that has lots of medical needs and interventions. We try and make sure that we have time with Sophie on her own, Francis House looks after Jack so that Sophie gets her own time with us.
“Francis House has stepped in when we really need them – if we’re at a point where we’re desperate for a break they’ve really helped us feel like a family again.
“It’s somewhere where you can come and remember what it’s like to be a mum or a dad or a parent, rather than a nurse doing medical interventions.”
When a child or young person reaches the end of their life, the staff at Francis House are experienced in palliative care and talking to families during this difficult time. There are three specially cooled Rainbow Rooms at the hospice, that families can personalise with toys, bedding and photographs giving them privacy and time to say their goodbyes.
“In the future, we know that we’re not going to have Jack around with us, and we know that Francis House are going to be here for us when that time comes. We’ve been shown around the Rainbow Room – they’ve always been very open about that; we know that’s where Jack is going to stay, and I know that we’ve got a plan for when that does happen.”
Tina and Jack are among the families featured in a new film produced by Francis House as the hospice celebrates its thirtieth anniversary year.