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Wales Online
Wales Online
National
Lydia Stephens

'My 10-year-old daughter planned her own funeral after being diagnosed with cancer'

Crystal Smith was just six years old when she was diagnosed with high-risk neuroblastoma in 2015. The "fiery and feisty" schoolgirl had been complaining of pains in her stomach and legs for the last year but various scans and tests discovered nothing.

Then in 2015 a blood test showed that she was severely anaemic, further investigations at Cardiff's University Hospital of Wales found that she had cancer. She was immediately started on chemotherapy, and received several rounds of radiotherapy and immunotherapy before ultimately being given a bone marrow transplant.

By 2017, she had gone into remission but just a year later, in January 2018, the cancer had returned. It was picked up at a routine scan, mum Sabrina Amor, 38, wasn't with her at the time as she was pregnant and restricted from attending scans for that reason.

READ MORE: 'Goodnight, I love you': The last text a kind and caring boy sent his friends the night before he died

Sabrina, from Cardiff, said: "I was pregnant at the time so my partner was taking her to the hospital. That day she was a little bit longer than I thought she would be so I phoned my partner, he said it's fine, they are just looking into something."

However, her worst fears had been confirmed and the cancer had returned. They had to wait until April before she could receive any treatment as Sabrina said there was better chances of it working if the cancer was more widespread to be attacked.

Sadly, Crystal passed away in December of that year, just seven months after her little brother Kobe was born. Sabrina said: "She was 10 when she passed away but it was like she was older. She was already planning her own funeral. She wanted to be buried with her nan. She had thought about it all.

"She wanted a horse-drawn carriage, and I would tell her to hang on, but that is what she was like, she knew what she wanted. She was still fiery and feisty. If you had met her, you knew it, you couldn't forget her."

Crystal with mum Sabrina (Sabrina Amor)

Sabrina said Crystal's little brother talks about her every day and tells his mum that he is playing with his big sister. Sabrina said: "He will say oh I'm just playing with Crystal. Every day he says 'morning baby girl, good night', he has helped me so much."

Crystal was supported by Cardiff charity Dreams & Wishes throughout her treatment. She was given a laptop to keep in touch with her friends, taken on a day trip to Downing Street, Lego Land and Harry Potter Studios. The charity also arranged for Crystal's wish of having a horse drawn carriage at her funeral.

Following Crystal's death, Sabrina ran the Cardiff half marathon with her daughter Georgia and raised over £2,000 for the charity. She also plans to complete more marathons in support of the charity.

Ceryl and Paul Giess' son Macsen was the first child to receive a gift from the Dreams and Wishes charity when it was launched 12 years ago. Their son was diagnosed with leukemia when he was just nine-years-old.

Ceryl said Macsen became very very tired and unwell but trips to the GP amounted to nothing. Eventually, they ended up in A&E with Macsen where his diagnosis showed up on a blood test, he was blue-lit from the Princess of Wales Hospital in Bridgend to Cardiff's Heath hospital.

Macsen had famously bright ginger hair and his family wear orange to remember him (Ceryl Geiss)

"It was absolutely the worst thing that could happen to you," she said. Macsen underwent chemotherapy at Cardiff's University Hospital of Wales before receiving a bone marrow transplant in Bristol.

Throughout his treatment, Ceryl, 50, said Macsen remained incredibly brave and was "cheeky" to the nurses helping him. She said: "He was so stoic how he dealt with things, he was incredibly brave, braver than us."

Following his bone marrow transplant, Macsen was in remission. However, in June 2012, he relapsed. Ceryl said: "It was just one of those things. The transplant didn't work. We were offered a trial drug but there wasn't a good chance it would work for him and by that point he had been through so much. He was given treatment to prolong his life.

"We didn't know how long we would have with him, they said it could be two weeks. It was that night, at 4am in the morning I was speaking to another dad on the ward, going through the same thing, and he said right you need to do a bucket list. And within 24 hours of being told Macsen had relapsed, he had been given the ok to leave the hospital and had a Ferrari waiting for him to take him home."

Tony Curtis from Dreams and Wishes had heard about Macsen and his love of sports cars, so managed to arrange the Ferrari to take Macsen home from Cardiff to his house in Porthcawl. Ceryl joked that Macsen was home having a cup of tea by the time they had arrived in their car.

After this, the family was supported by the charity and given a two-week holiday in a campervan with Macsen's siblings Elinor and Talisin which ended with a helicopter ride for Macsen. This all happened in the first few weeks after he relapsed, and Macsen got to celebrate 11th birthday two weeks after his prognosis.

The Celebration of life charity garden (Ceryl Geiss)

"He absolutely loved it, it was brilliant, we had a summer of making memories thanks to the charity." Macsen passed away in October 2012, a couple of weeks after he completed his first week at comprehensive school.

Paul, 50, said he and Ceryl have adopted the colour orange as their way of remembering Macsen due to his bright ginger hair. They both were wearing orange scarves when talking about their son and said the colour always finds a way of popping into their day.

Paul and Ceryl were at the Celebration of Life Garden at Heath Park on Saturday planting a tree in memory of Macsen. The couple have raised £20,000 to give back to the charity for everything they did for them. The charity have created a teddy-bear's picnic area where cherry trees were planted by families who have lost children or were treated at the University Hospital of Wales.

For parents like Paul and Ceryl, the park offered respite when their children were going through long surgeries, and is often a peaceful place away from the hospital. Saturday was the first time they both visited the hospital and park following Macsen's death, with the new park offering a place of sanctuary for parents to come and remember their loved ones.

Dreams & Wishes is a charity run solely by volunteers which helps seriously ill children by making their dreams and wishes come true. They provide families with vital support while also helping to build memories by granting lifelong wishes. To make a donation to the charity, please click here.

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