10 September 2023 , 06:00
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Sitting on the garden steps, Winnie-Rose Griffiths twists and squeals with laughter as her mischievous brother Luca tickles her under her chin, and the formal family photo they’d been posing for has to wait a few moments.
It’s a tender insight into the life the five-year-old has come to enjoy – which is very different from the one this little girl, dressed in a blue smock and giant hair bow, was destined for. Disabled and left in a rundown orphanage in her native Armenia, Winnie-Rose would most likely have ended up a prostitute.
“We knew what life looked like for her, particularly as a disabled child in a country where disability is not well understood,” says dad Ben, 37. “When a child ends up in an Eastern European orphanage, they tend not to come out. Winnie would have ended up as a prostitute, trafficked for sex... or dead because of neglect.”
It was the love and determination of Ben and wife Kate, 35, who spent five months pursuing her adoption, that rescued Winnie-Rose from that fate.
A brave girl
Now, an operation performed for the first time at Alder Hey Children’s Hospital in Liverpool, has given Winnie-Rose the hope of doing everything Luca, nine, and brother Wolfie, one, can do.
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Winnie-Rose was born with Proximal Focal Femoral Deficiency (PFFD), a complex and rare birth defect in which the upper part of the thigh is malformed or missing, meaning one leg is a lot shorter than the other.
Without surgery, children become wheelchair dependent. Treatment often includes amputating the foot or part of the leg, which then requires a prosthesis.
Orthopaedic surgeon Leroy James led an operation in February to rotate Winnie-Rose’s foot and ankle joint 180 degrees so it became her new “knee” joint, allowing a prosthesis below the knee. This was to save the limb and give her better function and comfort – and ultimately quality of life.
While being in a cast from her feet to her chest for 12 weeks was “mental torture” for active Winnie-Rose, she faced it with the same courage she relies on every day.
“She’s strong and brave,” says mum Kate. “Nothing holds her back.”
Business owners Ben and Kate, from Mold in North Wales, already had their eldest son Luca. They were successful and happy, but something was missing.
Kate, originally from Canada, explains, “I had Cabbage Patch dolls when I was growing up that came with adoption certificates, and I’d
tell my parents I wanted to adopt all these babies.
“Ben was involved in a Students’ Union programme at York University and had run residential camps for kids in need of a break, young carers, children in foster care... so we just knew we’d do it.”
Winnie-Rose was born with a complex and rare birth defect, meaning one leg is a lot shorter than the other
Winnie pictured at the family's piano (Sarah Burton)Initially they tried to adopt from the UK but weren’t eligible because Luca was then under three, so they decided to look abroad.
“I had two girlfriends who were adopted from orphanages in Guatemala and Romania, and they would say, ‘If I wasn’t adopted I probably would have died’, or, ‘I would probably be in child sex-trafficking’, yet they grew up doing horse-riding and music lessons. I wanted to be able to do that for another child.”
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Ben and Kate began the adoption process in 2016 and were approved by five countries the following year, but with two provisos:
they had to adopt a baby under 12 months and accept a disability.
When a dossier came back from Armenia for a baby named Ani, which they kept as her middle name, they knew they had found their little girl.
“I grew up around an Armenian community,” explains Kate, “and my grandmother was a tiny Italian lady who’d broken her left leg and it became shorter so she walked with a limp. Her name was Annie and her surname was Gambacorta which, translated, means Annie Short Leg. I always said that my grandmother would show me a sign and, crazy as it sounds, she did.”
Winnie-Rose was 11 months and 30 days old – just within the criteria set. “We said yes,” says Ben. “And we met her two weeks later, in June 2019.”
It was 45 degrees as they walked to the rusty-gated orphanage. “It smelled of urine and faeces, and the children were dirty and covered in bug bites,” Kate recalls. “Winnie was being held by one of her carers. She just looked scared.”
Real journey of hope
The couple rented a one-bedroom flat in Armenia for five months until they could take Winnie-Rose home. Then another journey began – to get her the surgery and help she needed. That’s when Alder Hey stepped in, after medics there spent two years seeking expertise from across the UK, to perform the 13-hour surgery.
The innovation team at the hospital produced a 3D-print of Winnie-Rose’s leg to help prepare the clinicians for the complex and delicate “rotationplasty” surgery. Then different teams from orthopaedics, plastics, anaesthetics, occupational therapy and physiotherapy were brought in – along with clinical psychologist Jay Thomas to get Winnie-Rose physically and mentally ready.
Mr James says, “Winnie-Rose is a wonderful child. The operation was very complex and we had to be very brave to give her the best start in life.” Consultant plastic surgeon Pundrique Sharma agrees. “It was a very bold decision. Many hospitals wouldn’t have attempted it as it’s not a common procedure.”
“The surgeons were incredible, they’re rock stars,” says Ben. “It was distressing knowing what Winnie would have to go through, but we had total faith in the team and Winnie has coped really well. She’s just had her new prosthesis fitted.”
Kate reflects, “Winnie had to be independent and fight for what she got in the orphanage. But because of the cast after the op and depending on us to carry her everywhere, it rebuilt her trust.”
Why put yourself through such an ordeal for a child you don’t know? Ben adds, “We felt as though Winnie had always been part of our family, We knew she was our child. The fact she wasn’t with us from the beginning is irrelevant.”
Ben and Kate have set up the Blue Bear Family Foundation which offers help to anyone looking to adopt children with extra needs internationally. For more information, see bluebearfamilyfoundation.com