‘Feisty’ Holly is one of 297 people with rare disorder
A three-year-old girl with a rare condition which makes her more susceptible to cancer is recovering after having a tumour and her kidney removed.
Holly Prince, from Hindley, is one of just 297 people around the world diagnosed with Bloom syndrome, which can lead to people being short in stature, sensitive to sunlight and having a greater risk of getting cancer.
Her parents Mark and Jenny knew something was wrong when she was a baby and did not grow as she should, so she was given growth hormone injections and medical investigations were carried out.
DNA from Holly and her parents was even examined as part of the 100,000 Genomes Project, which was announced by then-Prime Minister David Cameron in 2012 to look into cancers and rare diseases.
In March, they were finally told she has Bloom syndrome.
Mark, 36, said: “It was a whirlwind. It was like a piece of my heart had been ripped out.
“We have two other children - Evie, eight, and Jack, six - so we were worrying if they had it too.
“We are all carriers of something and whatever I was carrying and Jenny was carrying has come together and that’s what Holly has got. It’s dreadful.”
Bloom syndrome is a genetic condition with no treatment and no cure. People with the disorder have an average life expectancy of 27.
The family was told Holly would need regular screenings for cancer and plans were made to see an oncologist with expertise in Bloom syndrome at Royal Manchester Children’s Hospital.
The appointment was postponed due to the Covid-19 pandemic but eventually they met the doctor in June and Jenny and Mark mentioned that Holly had blood in her urine the day before.
An ultrasound revealed a tumour on her left kidney. It was found to be Wilm’s tumour, a rare kidney cancer that affects children.
Mark said: “It was devastating. It wasn’t the news we were hoping. It was totally unexpected, especially so soon after the diagnosis of the Blooms. It happened so quickly.”
Staff at Royal Manchester Children’s Hospital had never before treated a child with both Bloom syndrome and Wilm’s tumour, so they had to contact other doctors around the world for advice
Only three of the 297 people with Bloom have also had Wilm’s tumour.
A biopsy was carried out the following week and then Holly began four weeks of chemotherapy.
She initially received 45 per cent of a normal dose of chemotherapy due to the Bloom syndrome, before it was increased to 66 per cent.
Last Tuesday, an operation was carried out to remove both the tumour and Holly’s kidney. She is now recovering while doctors decide whether any further treatment is needed.
It has been a difficult few months for the Princes, but fortunately they have received “overwhelming” support from their friends and family.
More than £13,000 has so far been donated to an online appeal set up by Mark’s friend Phil Barnes, smashing the initial £1,000 target.
Some of the money will be used to pay for Holly to go to a meeting of the Bloom Syndrome Association in Chicago, while a donation will also be given to charity Kids With Cancer.
Mark, who works as a construction site manager, said: “It would be a good opportunity for her to meet other kids and people with it and share their experiences.”
While some of the money has simply come from donations, people have also taken on challenges to raise cash.
More than 62 people took part in a bike ride from Leigh to Old Trafford and back, organised by Mark’s brother, while family friends raised £1,200 by climbing Snowdon.
Jenny, 35, is a PE teacher at Westhoughton High School and a former pupil plans to raise money through an open water swim at Ullswater, while other people are planning football matches and golf days.
Despite everything, Holly continues to be the “feisty” and “stubborn” girl she always was. She attends Brooklands Nursery in Hindley, loves Peppa Pig and has a special bond with her grandad Dave Prince.
Mark said: “Holly has been unbelievable. She surprised us all.
“At the initial consultation for chemo she was expected to lose her hair and there was a very slim chance she wouldn’t, she would have mouth ulcers and be very tired, so we were expecting the worst.
“She has managed to keep her hair, she is a bit groggy in the mornings and complains of sore feet, but once she gets walking she is okay.
“She has been a little soldier.”
But no-one knows what the future holds and her family are aware she could face cancer again in future, with leukaemia being the most common kind for people with Bloom syndrome.
Mark said: “We just have to get on with it. My outlook on life has totally changed. Whereas we were worrying about saving up for things before, since this she has been spoiled.”
Jenny and Mark have set up a Facebook page to keep people updated on Holly’s progress, which can be found by searching for Holly’s Bloom Journey.
Donations to the appeal can be made at www.gofundme.com/f/uvz2xm-holly039s-hope.