Est. read time – 3-4 minutes
Christmas will always be a poignant time for Jaycee Wharfe.
This time last year, she and son Finn were preparing to appear on stage with The Treehouse choir as part of Happy Christmas Ipswich 6.
It created memories she will treasure forever – a genuine ‘wow’ moment and golden opportunity that both of them grabbed with both hands.
Ten-year-old Finn lived with a number of complex medical conditions, including septo-optic dysplasia, holoprosencephaly, diabetes insipidus and epilepsy, and had been receiving care from East Anglia’s Children’s Hospices (EACH).
Despite doctors initially predicting he might only live for a year, he spent a decade defying expectations but sadly passed away on New Year’s Eve – less than a month after his unforgettable performance at the Regent.
It was one of his most cherished experiences and came after an invite from EACH Music Therapist Ray Travasso.
“I told Ray I couldn’t sing, but he said it didn’t matter,” laughed Jaycee.
“After rehearsing together on Finn’s birthday, we joined other families on stage and it turned out to be an unforgettable night.
“Finn was shaking his bells and clearly loved being on stage, to the point that I kept forgetting to sign the lyrics because I was so pleased to see him having such fun.
“As soon as the curtains parted, he performed, and it’s such a fond memory that will stay with me forever.
“He absolutely loved music, whether from a musical, a show or on the radio, and got so much enjoyment from it.”
Throughout his life, The Treehouse became a special place to Finn.
“It opened doors and gave us so many opportunities,” said Jaycee.
“We made countless memories there, and it was always a safe space.
“Finn was a happy boy who tackled his condition like a superhero.
“He particularly loved music nights and loved playing instruments, especially the chimes.
“Everyone went out of their way to make us feel comfortable, welcome and supported.”
Hydrotherapy sessions were another highlight.
“It was so beneficial because it relaxed his muscles and he was able to move his legs,” she said.
“He was such a cheeky, smiley, happy boy and also loved spraying the staff with a water pistol.
“Finn loved it at the hospice and spending time in the grounds.
“As soon as we first walked through the doors, we knew it was a special place. It was like a home from home.
“No-one judges you in the same way they do in a public setting, where people stare at children like Finn.
“Here, they just treated him the way he wanted to be treated.”
The Regent became a significant venue once again just weeks after Finn and Jaycee’s Happy Christmas Ipswich performance.
The pair had spent the afternoon back at the theatre watching the pantomime Cinderella, with tickets donated through EACH.
After arriving home, Jaycee realised Finn had stopped breathing. Despite her best efforts and performing CPR, paramedics were unable to save him and he passed away shortly afterwards at hospital.
Later that evening, with fireworks illuminating the sky as they crossed the Orwell Bridge, the family arrived at The Treehouse.
EACH’s support gave the family two more precious days together, including memory-making opportunities.
The care team prepared his room with personal touches, including dinosaur bedding and his name on the door.
“They bathed and dressed Finn and treated him with such dignity and respect,” said Jaycee.
“It wasn’t just me they were there for. They were also there for his grandparents, great-grandparents, aunts, uncles and cousins.
“They brought a bed in because they wouldn’t let me sleep in a chair and when I was told I needed to eat, the chef made my favourite meal.
“The hospice supported us all and nothing was too much trouble. They gave us that time together and our family were able to stay in other rooms.
“They made an awful, horrendous time that little bit easier, and that will always stick with me.”
Nearly a year on, EACH’s support continues through bereavement counselling, remembrance events and ongoing contact with staff.
“They know when I’m putting a mask on and always look out for me,” said Jaycee.
“People see a hospice as a place of death, but it’s so much more than that.
“Thanks to The Treehouse, I have so many memories of Finn.
“There have been so many ‘wow’ moments, like in the hydro pool or when he played an instrument, and that’s all thanks to EACH.
“It helped enrich his life.”
Finn certainly embraced every opportunity, from short breaks and hydrotherapy sessions to music therapy, themed music evenings and beach trips to Felixstowe.
Sharing his story has now become an important part of preserving his legacy and raising awareness of children’s hospice care.
“The people who work at the hospice are amazing people and deserve so much recognition because they’re like angels,” said Jaycee.
“They let him do things his way and didn’t ever just put him in a category because of his condition.
“Thank you will never be enough, and sharing our story is part of Finn’s legacy.
“I’ll do anything to raise awareness and show more people how special and magical EACH is.”
