Despite everything life threw at him, little Frankie Wilson always faced every challenge with courage and without complaint.
Before he was even born, doctors discovered he had a congenital heart defect so serious they believed it was unlikely he would survive long after birth.
However, while Frankie defied medical predictions, his short life was punctuated by countless hospital visits which culminated in an eight-month stay at the Royal Belfast Hospital for Sick Children (RBHSC) while he waited for a heart transplant.
Tragically, Frankie – from the village of Tullylish in Co Down – experienced a series of catastrophic complications after the surgery and, aged just four-years-old, passed away in his mummy’s arms on June 28 last year.
Now, as Christine prepares for the first anniversary of her devastating loss, she is turning to her local community to help her honour her precious son’s memory with a fundraising drive.
She says: “Frankie had a real love for life, he taught everyone a lesson about living and loving and being happy.
“So that’s what we’re trying to do now, we want to make the most of our lives for him.”
Christine was at her 20-week anomaly scan when doctors broke the devastating news that her unborn baby had a complex heart defect.
She explains: “We had lost a baby two years before Frankie was born, he was our rainbow baby, so I was absolutely devastated when I was told.
“I just felt like it couldn’t be happening, it didn’t feel real.
“We were transferred over to the Royal and told he might not get home and it would just be comfort care.
“We were told his treatment was always going to be palliative so we knew we wouldn’t get to keep him.
“They gave him less than 10% chance of survival and said we would have to wait and see but after losing our last baby, I was adamant I was going to give him a fighting chance.
“As it turned out, he did really well, I think he did a lot better than expected as a lot of heart children suffer a brain injury, but he was fantastic developmentally, he was so sharp.”
In spite of this, given the serious nature of his condition, Frankie contended with a significant number of setbacks over the years.
He went through three open heart surgeries before his first birthday.
Meanwhile, with his heart failing, his oxygen levels were a constant concern and he was also fed through a tube.
But he never allowed this to stop him live as normal a life as possible – and neither did Christine, also mum to James (14), Billy (11) and two-year-old Arthur.
“I let him climb and wrestle with his brothers if he wanted to,” she says.
“He just was interested in lots of things, he loved superheroes, he was interested in life. I hate to use the word ‘normal’ but all he wanted was go to school and do all the things his big brothers did.”
Eventually, however, Frankie’s condition declined to the point he was placed on the routine waiting list for a heart transplant in February 2021.
He was moved onto the urgent list in October that year and was admitted to the RBHSC to receive life-saving care while he waited for a suitable organ to become available.
As he had always done, Frankie delighted staff, patients and parents in Clark Clinic with his infectious smile and outgoing personality throughout his eight-month stay.
He loved dancing and ordering pizza with the nurses on a Friday night, he referred to the doctors by their first names and every evening without fail, he visited each baby on the ward to wish them a good night.
“He was amazing, an exceptional wee boy and everyone who met him was touched by him,” says Christine.
Despite his cheery demeanour, Frankie was also forced to confront the cruel reality of his condition when his friend, another young patient, passed away.
Initially, Christine shielded him from the truth.
“I told him he had gone home and he asked why his toys were still there,” she explains.
“But then his mum and dad came to visit and I had to explain to Frankie that his parents were coming and he asked where his friend was, so I put it in the simplest terms possible.
“I told him his body was no good to him anymore, he was in heaven and didn’t live with his mummy or daddy. Frankie was sad about that, but I felt it was the right thing to do.
“We were in a world where you couldn’t imagine such things existed, really unfathomable things were happening.
“Frankie used to say he lived in Clark Clinic but he did start to ask when he could go home and I told him he had to wait until he got a new heart.”
The long-awaited call came at the end of May and Frankie’s initial reaction was to decline the operation.
Christine explains: “He was frightened and at first, he told us to call them back and say ‘no, thank you’.
“Everyone was crying, it was so emotional, but the doctor explained it would mean he would be able to go home to his brothers and go to school.”
As he made the journey to the specialist hospital in Newcastle-Upon-Tyne for the transplant surgery, Frankie expressed excitement at the prospect of finally returning home.
However, it was not to be.
Christine continues: “It seemed to have gone well but then every complication that could happen, happened and he never got out of ICU.
“We had to call home and get his older brothers over to spend time with him. They went home on the Monday and he passed away on the Tuesday morning.
“He squeezed my hand and passed on my knee, at the end I was with him which is something I need to see as a positive.
“There are moments where I feel like I should have brought him home from the Royal to let him pass at home but I know he deserved that chance and I’m so grateful to the donor’s family for making that decision because it’s a devastating position to be in.
“It was such a brave decision to donate organs but unfortunately it was too steep a hill for Frankie to climb.
“We knew before he was born it was going to be a long road and there are lots of other people making it too but I would say this has been the most difficult part of the journey, doing it without him.”
Determined to create a lasting legacy for Frankie, Christine and stepdad, Denver, are hoping to raise enough money to create a special space for families of children receiving treatment at Clark Clinic, Northern Ireland’s regional paediatric cardiac ward.
They want to refurbish a visiting room with furniture and other items, such as a microwave and fridge, that will allow parents and siblings to spend time with their loved ones in a home-from-home environment, particularly as visiting children are not allowed onto Clark Clinic.
This is done to prevent spread of infection among the patients on the ward, but it means siblings don’t get to spend much time together.
As well as dressing up as superheroes and holding a street collection in Banbridge town centre on July 15, they are also holding a fundraising night at Banbridge Rugby Club on July 1.
There will be a pub quiz, buffet, raffle and music.
Tickets, costing £10 which include a raffle strip, are available by emailing cc_wilson@live.co.uk or you can pay at the door.
Alternatively, you can make a donation through Christine’s JustGiving page.
Christine continues: “Although I wish life had been different for Frankie, I wouldn’t have changed anything about him because he was amazing.
“If there’s a lesson to be learned, it’s that life isn’t guaranteed to anyone. Frankie didn’t live long but he was amazing and anyone who met him was privileged, he was so courageous and never complained, he was such a joy.”