Jack’s story: Hospice care brought our family closer together
Jack, is 10 and has a rare and life-limiting neurological condition called Aicardi-Goutières Syndrome (AGS). His condition means he is immobile, unable to hold his head up, he can’t speak, and he receives all his nutrition through a feeding tube. At night he wears an oxygen mask to help him breathe. Despite this, mum Tina describes Jack as “a happy boy who loves school and has an amazing smile.”
Tina had a normal pregnancy and birth with Jack, but after few months he abruptly stopped being able to keep food down and began crying constantly. An MRI on his brain revealed neurological abnormalities, but tests were inconclusive leaving Tina and her husband, Dave, with no idea what the future might hold. They were referred to Francis House Children’s Hospice in Greater Manchester when Jack was around one year old.
“I just remember the neurologist saying the word ‘hospice’ and you immediately think, ‘oh my goodness, are we there already?’ But then you arrive and it’s just nothing like you’d imagined,” says Tina.
“First off, I was struck by how unlike a hospital it was. There were settees and a full Sunday Roast all set out, and everyone was so friendly and chatty. They invited us in like it was home and made us feel really welcome. Especially Sophie, who was only eight at the time and still coming to terms with being a big sister, let alone everything else that had happened. “
In hospital it’s naturally all about the poorly child, but when we got to Francis House it was so clear they were here for all of us.
Tina, Jack's mum
When the family did eventually get a diagnosis, it came via a groundbreaking study called the 100,000 Genomes Project. Set up to pioneer how genomic medicine might be integrated into NHS care, it seemed their best chance of finally getting a diagnosis, recalls Tina:
“We signed Jack up when he was about four. Scientists examined his entire genome, not just targeted areas as they might have done previously. We were among the first to benefit from this completely new whole genome approach.
“When we got the diagnosis, it wasn’t quite the turning point we’d hoped for – there is no cure or treatment – but it did at least give us some clarity. For example, knowing the specific genes involved means Sophie, Jack’s sister, can in future choose to have genetic testing to find out whether she’s a carrier, perhaps before starting her own family.”
Sophie, now 19, has spent regular time at Francis House throughout her childhood – sometimes together as a family, sometimes staying overnight with Jack in her own room. It’s allowed her to get to know other children and young people like her and receive support from specialist staff who really understand what siblings of seriously ill children go through.
“Knowing Jack won’t be around forever is such a difficult thing to come to terms with, but they get how it impacts siblings and have always known how to support her. It’s also somewhere we can spend time as a family without having to constantly plan for every eventuality,” says Tina, who recently went on a family visit to Cockfield’s Farm arranged by Together for Short Lives.
“I think the best bit for me was the wheelchair accessible tractor ride, which was pretty epic and certainly not something me and Jack get to enjoy every day!”
When someone organises a day out for you, without all the planning and worry, it’s like a breath of fresh air. It means we can enjoy our time together and just be ourselves with other families, who all know what it’s like too.
Tina, Jack's mum
Caring for a seriously ill child, especially one with complex medical needs, inevitably puts strain on family life. Accessibility issues, transport, practical considerations and regular medical appointments can all get in the way of being able to spend quality time together. Together for Short Lives aims to help break down these barriers, by working with a variety of partners to create magical experiences for families to bond and make special memories together when they need it most.
One such partner is ‘A Disney Wish UK’, who host a special three-day immersive experience for families caring for sick children aged 3 – 17, whose circumstances mean they are unable to travel to a Disney Park. Families can apply directly to our helpline team for the chance to make their child’s wishes come to life.
Guests are treated to themed events such as Disney shows and singalongs, an accessible carousel, a Toy Story carnival, partying with Stitch in the Silent Disco and getting to spend plenty of time with their favourite princesses.
But for Jack, there was one extra special highlight.
“Spiderman and The Hulk are two of Jack’s all-time favourites,” says Tina, whose dreams of a trip to Disneyland had been scuppered upon discovering the immense cost and logistical nightmare of taking Jack on a flight.
“I’d always thought meeting Disney characters meant going on a plane, which is almost impossible with Jack’s needs. This was a chance for us to make special memories together in a place where nothing was off limits for him. Honestly, that meant the world to us!”