Soffia’s story

In August 2025, 13-year-old Soffia from Llanelli enjoyed an unforgettable summer holiday in Greece with her parents, Rhian and Jeremy, and her younger sister, 10-year-old Cara.

But shortly after the family got home, Soffia started complaining of pain in her knee and along the outside of her leg. Having recently had a growth spurt, her parents initially thought it was just growing pains.

The pain was intermittent for a while but over time, it got worse. Soffia started struggling during gym lessons at school and became excessively tired.

When Rhian examined her daughter’s leg, she discovered a lump on the inside of her thigh. More worryingly, she could feel it pulsating. Rhian took Soffia to the minor injuries unit at Prince Philip Hospital where an X-ray revealed a lesion. Rhian said: “They gave us an envelope and told us we needed to go straight to PACU at Glangwili Hospital.”

From that moment, things moved quickly. Soffia underwent a series of urgent investigations including MRI scans, whole-body scans, scans of her femur and a CT scan of her chest. The family also met with orthopaedic consultants and were advised that Soffia should walk on crutches as her femur would likely be weakened by the lesion.

One conversation remains etched in Rhian’s memory: “The orthopaedic consultant said, ‘It doesn’t look good.'”

On Christmas Eve, Soffia travelled to Birmingham Children’s Hospital for a biopsy. She had to stay overnight, meaning she had to watch her little sister, Cara, open her Christmas presents over a video call and wait until the evening to open hers.

Then came the agonising two week wait for results.

During this time, Soffia was out with her father when her foot slipped from underneath her on her crutches. The tumour had weakened her bone so significantly that her leg had fractured just by putting her body weight through it.

She was taken by ambulance to Glangwili hospital where she was placed in a cast stretching from her hip to her ankle. The left side was left open so that Soffia’s leg could be accessed for a second biopsy, which was carried out in Birmingham Children’s Hospital.

Soffia was diagnosed with telangiectatic osteosarcoma of the left thigh, a rare and highly aggressive type of bone cancer.

Soffia was transferred to the Noah’s Ark Children’s Hospital for Wales to begin chemotherapy. Sadly, Soffia’s leg suffered significant swelling and it became clear after the second round that the chemotherapy wasn’t working as effectively as hoped. The clinical team now had two options. One was a metal femur replacement, but there wasn’t enough healthy tissue or muscle to support it which meant that Soffia would have very limited function in her leg. It also meant a greater risk that the cancer would return.

The second option was an amputation. While life-changing, it offered the best chance of removing the cancer completely and would ultimately provide greater mobility through the use of a prosthesis.

The decision was clear, but her parents were understandably worried about how 13-year-old, Soffia would take the news. But, Rhian says: “She probably cried for about 30 seconds to a minute and then said, ‘I’m happy with that Mam.”

On the 28 April, the family travelled to Birmingham Children’s Hospital. Two days later, Soffia underwent surgery to have her left leg amputated. Having seen for themselves how advanced the cancer had become, the surgeons reassured the family that the right decision had definitely been made.

Soffia was recovering well and, with the support of physiotherapists and occupational therapists, slowly regained her mobility and independence. There were setbacks along the way, including a frightening episode of severe headaches and vomiting, but after a few days she was finally able to return home.

Although the tumour had been removed, there remained a possibility that microscopic cancer cells are still present. Soffia therefore faces a further six cycles of chemotherapy and immunotherapy and she was back on treatment just two weeks after her surgery.

Today, her rehabilitation is progressing well and once her wound has fully healed and she has completed her chemotherapy, she will be fitted with a prosthetic leg. She’s already beginning to enjoy some of the things she loves again, going to the cinema with family and friends and taking out her beloved dog, Poppy, who’s more than happy to tow her wheelchair!

Rhian says: “She’s always looking at the positive side. She’s even planning on going back to horse riding.”

One of the things that has helped Soffia most throughout her treatment is art. Creative and talented, she loves painting and sketching. Recently, one of the artistic nurses, Daisy, gave Soffia a special project to paint one of the ward windows. Soffia was chuffed and after carefully choosing her design, she set to work creating a Rainbow Care Bear for Rainbow Ward.

Rhian said: “She begged me to wake her up early so she could get a head start. She sat there painting all day. It’s so nice to see her getting back to something she enjoys.”

Soffia has also formed a touching friendship with another Rainbow Ward patient – three-year-old, Teddy. She has painted and sketched some of his favourite characters, including Bluey, Marshall and elephants. In return, Teddy did a colouring picture for Soffia. Despite the 11-year age gap, the pair have been exchanging artwork throughout their time on the ward. “It’s so sweet,” says Rhian.