WHAT LITTLE MIA DID NEXT
‘PEOPLE HAVE HELPED SO MUCH... WE CAN’T GET OVER IT’:
The brave ‘rainbow warrior’ whose illness united Wales... ...and how her ongoing recovery will help other sick children
REMEMBER the thousands of rainbowcoloured ribbons that decorated Welsh streets over the past 18 months or so?
Motorists drove around Wales with the ribbons attached to their car grilles, businesses used them to adorn their premises and residents hung them on their front doors and gates.
The ribbons were a remarkable show of support for a little girl called Mia Chambers, affectionately referred to by those who know her as the “rainbow warrior”.
After suffering from neuroblastoma – a rare type of cancer that mostly affects babies and young children – a rainbow-themed campaign was started to try to raise funds to give the youngster access to a clinical trial aimed at avoiding a relapse.
The fundraising campaign took off and the multi-coloured ribbons became synonymous with Mia, especially in her hometown of Merthyr Tydfil.
If anything pays testament to the spirit of a Valleys community, this is it.
Mia first became unwell in early 2016 when a cancerous lump was discovered in her stomach and she was taken to Noah’s Ark Children’s Hospital for Wales in Cardiff.
Further tests confirmed the lump was stage four high risk neuroblastoma – a rare type of cancer that mostly affects babies and young children.
After treatment saw her free of cancer, the aim was to be able to go to America for a trial aimed at avoiding a relapse.
Remarkably, £170,000 was raised for her by May 2017. In August last year, the total stood at £280,000 – enough to send her to Michigan to begin the treatment.
Now, two years after the sixyear-old’s diagnosis, the brave youngster has turned her attention to helping others facing the same situation.
Life in the Chambers household is starting to return to normal after an unimaginable two years.
When the Merthyr family are not embarking on their mammoth journeys for Mia to receive treatment in America, or otherwise opening half marathons or turning on Christmas lights, the primary school pupil is happy to be back at school full-time.
“A lot of people still recognise Mia and will stop and make remarks and ask how she is doing,” Mia’s father Josh said.
“People still smile everywhere we go because she’s in such a good situation compared to where she was a year ago. She’s still a little bit famous but it’s getting a lot calmer which means Mia can be a child again.”
In many ways, Mia’s response to the cancer was far from normal.
Throughout three months of intensive chemotherapy, surgery, a stem cell transplant and radiotherapy, the youngster astonished medical staff with her resilience.
Josh, 29, said: “One day we were sat down by the top consultants and given the worst case scenario. They said it might not happen but they had to tell us.
“At this point she was getting battered so hard by chemotherapy. After 80 days of chemo the doctors just said how we were all still at home they didn’t know, they had never seen a child react as well as she did.
“Then when she went into surgery they said it would take between six and eight hours to remove her kidney and an ovary.
“It took three hours because they were able to remove the full kidney with the tumour. She lost an organ, but it wasn’t any good because of the cancer anyway.
“After that they said they were going to give her something so that she would sleep for two days. At that point we heard some screaming and we thought it was strange because it sounded like Mia and it was her – she was awake 10 minutes later.”
He added: “That’s when her nickname started. At the hospital she was called Mia Poppet and she hated it. A nurse asked what she wanted to be called instead and she just said ‘call me rainbow warrior’.”
On the campaign, Josh said: “When we first set up the fundraising page it was during a quiet time for Mia’s treatment. That was the big worry as it gave us time to think.
“The first part of treatment was almost crammed into six months. As it started to come to an end we had heard about this thing called DFMO.
“We knew about it but didn’t have access to it so the fundraising gave us purpose.”
With cancer experts saying patients with neuroblastoma have a high rate of relapsing, Mia’s family soon realised her best chance of avoiding that was to undergo a clinical trial in the US.
DFMO (difluoromethylornithine) is a drug used for African trypanosomiasis – an insect-borne parasitic disease of humans and other animals. It is being tested in children with neuroblastoma in remission to see if it will prevent the cancer from recurring.
For Mia to undergo the trial, however, her family, together with charity Solving Kids’ Cancer, had to find more than £100,000.
On March 31, 2017, the town of Merthyr Tydfil celebrated Rainbow Day to raise money for Mia. Hundreds of people added rainbows to their profile pictures on Facebook, while children wore bright colours to school.
Meanwhile, in Suzanne’s Florists on Brecon Road, a group of women were working around the clock to churn out bows to sell.
Looking back, Josh said: “There were six or seven women working 15-hour days to make the ribbons.
“Suzanne would only take the cost of the ribbons, she wouldn’t accept any money for the time. Rainbow Day was in March [2017] and they were still making them when we left for America in the August last year.”
Thanks to their hard work, Mia’s rainbow bows raised £55,000 alone. To date, Mia’s fundraising campaign has amassed an astonishing £311,000.
Today, Mia’s family can’t express how much the support has meant to them.
Josh said: “The bows were something so simple that were able to achieve so much. It’s amazing, people have come up to me with rainbow tattoos.
“The other day I saw a man with one of the rainbow tattoos. I didn’t know him from Adam.
“I still can’t get over what has happened. It’s given Merthyr a good name.
“Mia will make remarks about the bows when she sees them. She knows the bows are about her but she doesn’t understand fully.”
Now, 18 months after Rainbow Day, Mia has just reached the halfway stage of her trial in Michigan. For each journey, the family must take four flights for a threehour hospital appointment.
Josh said: “Mia was cleared in August 2016. Since then we went to America in August last year, then again in November, February and this August. Doctors are happy with how she’s doing.
“The last time we went we stayed for a day purely because we don’t want to eat away at Mia’s funds for unnecessary reasons.
“Now our hospitals are working with US hospitals and are scanning her before we go, which makes a big difference. It means we are able to go to America knowing everything is fine.” Once again Mia’s resilience is astounding medical staff, but this time it’s across the pond.
Josh said: “A lot of children suffer hair loss and hearing loss with the trial, which can mean you might have to stop for a while but Mia hasn’t had that.
“She knows that when she goes there she can pick a toy where we go out there, so she’s happy.”
September marked Mia’s return to full-time education at Gwaunfarren Primary School.
Josh said: “We thought she would have to go back a school year because she’s missed so much, but she’s been able to stay with the other children she started school with. She loves it.”
To mark the occasion – and to help others in Mia’s situation – pupils at the school took part in a Go Gold fundraising event to raise awareness for childhood cancer. As well as wearing gold, each pupil donated money to support Solving Kids’ Cancer.
By working with the charity, Mia’s family have ensured that, after seven years, any money left from the youngster’s funds will also go to helping other children access treatment in future.
For Mia’s family, the Go Gold event is only the start as a way of thanking everyone for the endless support they have received.
Josh said: “People have helped us so much and we didn’t want to ask people to give money again but people didn’t bat an eyelid.
“Every single pupil donated a pound – it was amazing.”