An anguished mum whose teenage daughter is fighting a rare cancer has launched a fundraising appeal for potentially lifesaving treatment in Germany.
AASMA DAY talks to Nilanthi Dunderdale about her daughter Grace Fernando’s story and how she wants to do everything in her power to save her life.
Idly glancing at her daughter Grace Fernando’s face as she stood in the kitchen, Nilanthi Dunderdale was taken aback to notice a lump on her cheek.
Nilanthi, 44, who lives in Euxton, near Chorley, recalls: “The lump was only small and was on her cheekbone.
“At first, we thought she had just banged herself as she had done PE at school that day.
“I put an ice-pack on it but the lump did not go away.”
Grace, now 14, was 12 when the lump appeared on her face. The following day, her mum took her to the GP to get it checked out but she never imagined it would result in such a devastating diagnosis.
Nilanthi says doctors were puzzled by the lump on Grace’s cheek as they had never seen anything like it.
Nilanthi remembers: “The GP asked another doctor to take a look at it as she did not know what it was and he said he would ask an ENT specialist at hospital to take a look.
“The next day, we went to Preston Hospital and the doctors and specialists were asking so many questions as they had not seen anything like this.
At first, we thought she had just banged herself as she had done PE at school that day.
“It is such a rare cancer that the chances of a doctor seeing it are something like once every 10 years.
“They knew it was a lump, but at this stage, they didn’t know if it was cancerous or not.”
Grace was sent to Royal Manchester Children’s Hospital where she underwent scans and a biopsy and in November 2015, she was diagnosed with Ewing Sarcoma, a rare type of cancer that affects bones or the tissue around bones.
It is usually more common in boys than girls and fewer than 30 children in the UK develop Ewing Sarcoma every year.
At this stage, the cancer was localised to Grace’s cheek and had not spread anywhere else in the body.
Grace underwent 14 cycles of chemotherapy and in 2016, she was sent to America for proton beam therapy for her face as there were no centres in the UK offering this treatment.
Nilanthi, who also has sons Joshua Fernando, 11 and Daniel Fernando, eight and is married to Steven Dunderdale, says: “The NHS paid for Grace’s treatment and paid for her and two carers to go to America.
“We used our savings to pay for all the family to go out there to be with Grace and the charity Clic Sargent raised £2,000 to help us.
“Grace was out there for two months and had 28 days of proton beam therapy followed by chemotherapy.
“The proton beam therapy was successful but Grace had a very bad reaction to it.
“It was as though someone had thrown acid on her face and it went very red.
“It was the reaction to the proton beam as it was like direct sunlight on her face.”
After returning to the UK, Grace had more chemotherapy at Manchester followed by a major operation to re-construct her cheekbone.
Nilanthi says: “They took two pieces of skull and created a cheekbone and put titanium in Grace’s cheek to hold it together.
“A plastic surgeon came over from Italy to help with the operation and they all did a brilliant job. You cannot even see the cut on Grace’s cheek.
“Grace did suffer some side-effects. The doctors had to scrape all the nerve system to get into the bone and Grace does not have much feeling in her face. She also has limited opening of her mouth.”
After finishing her treatment last year, Grace slowly began getting her life back together and went for regular routine check-ups.
In June this year, Nilanthi began fearing the worst when Grace started losing weight followed by her struggling to breathe.
Grace, who is a pupil at Leyland St Mary’s Catholic Technology College, went for a chest scan and the consultant told them there were patches and following more tests, they were given the bad news that the cancer had returned and was in Grace’s lungs. Cancer cells are also present in her bone marrow.
The tumour in Grace’s lung had fluid around it and she had surgery which drained four litres of fluid.
Grace is now undergoing more chemotherapy. But as the cancer had returned after just 11 months, doctors have warned there was a high risk the cancer could return again.
Nilanthi began researching potential treatments to save Grace and prevent the chance of the cancer returning.
During her investigations, Nilanthi came across Verita Medical Services in Germany who say they have the most advanced treatment to treat Grace’s condition.
However, the clinic has asked for £200,000 so Nilanthi has launched a justgiving fundraising campaign to try to raise enough money to fund the treatment for her daughter.
Nilanthi, who is a welfare assistant at Euxton St Mary’s Catholic Primary School, explains: “We are desperate to provide Grace with the best possible outcome in life.
“Unfortunately, the treatment in the UK is not advanced enough to tackle this condition.
“Having researched Grace’s condition in detail, I have found a specialised hospital in Germany which has the right medicine and care facilities to give Grace a fighting chance.
“As a mother, I am really terrified as I don’t want anything bad to happen to my daughter.
“Grace has already been through so much harsh chemotherapy and rather than waiting for the cancer to come back a third time, I want to do everything in my power to give my daughter the best chance.
“If I could get the money we need, I would fly out to Germany with Grace tomorrow.
“If the treatment Grace is currently having in the UK miraculously works and she doesn’t end up needing the treatment in Germany, I will donate any money raised to charity to help other children and families in this situation.
“I just want to give my beautiful daughter the best chance possible to get her life back.”
Grace says: “I am currently suffering from Ewing Sarcoma. It’s been two years now and I have recently relapsed.
“I was cancer free for 11 months but got it back and I know I am at high risk of getting it again. I am undergoing treatment but I don’t know how I will survive.
“I am currently trying to raise £200,000 for treatment in Germany so that I can live without fear.
“Anything people can do would be really appreciated because I am desperate.”
l To help Grace get treatment in Germany, visit: www.justgiving.com/crowdfunding/fight4grace