Our amazing Joni-Mai Stevens story is covered by the Daily Mail as she fights bone cancer
So desperate are Holly and Kevin Stevens to save their daughter’s life, they will do almost anything.
While eight-year-old Joni-Mai is bravely fighting a rare form of bone cancer, her parents, family and friends have been fundraising.
As well as cake sales, sponsored walks and boxing matches, they have even been collecting aluminium drinks cans to sell to scrap yards, to raise just pennies – such is their devotion.
Mrs Stevens told MailOnline: ‘Every little bit helps. Every penny is a penny closer to us raising the money we need to pay for Joni’s future treatment.
YOU CAN DONATE TOWARDS JONI’S FIGHT HERE: http://www.gofundme.com/WCBLondon
‘It is very difficult going from being an independent family, to having to ask people for help. It is horrible but we are just so determined to do everything within our power for our daughter.
‘It’s an uphill battle, for every step forward there are four backwards.’
Joni-Mai Stevens, now eight, was diagnosed with a rare form of bone cancer, Ewing’s Sarcoma in September 2011, when she was five years old. After going into remission her cancer returned in November last year.
Her parents, Kevin and Holly Stevens, pictured with Joni and her sister Daisy, four, are desperately raising as much money as they can to fund future treatment for their eldest daughter. It is the second time Joni has fought the cancer – five tumours now invading her skull, spine and ribs. First diagnosed in 2011, she faced 14 rounds of gruelling chemotherapy, radiotherapy and a major operation before specialists declared her disease in remission a year later.
But in November 2013 the Stevens’ world came crashing down around them for a second time – Joni had relapsed and her cancer had returned.
With just two treatment options left on the NHS, Mrs Stevens told MailOnline the family fear it the moment when her daughter’s doctors reveal there is nothing more they can do is fast approaching.
Such is the rarity of Joni’s cancer, her only hope may be treatment at a specialist clinic abroad. Refusing to give up, the couple from Hornchurch in Essex are desperately doing anything they can to raise £150,000 to fund future treatments for their eldest child. Joni first started to complain of an ache in her thigh in September 2011, when she was five years old. On and off for three months the pain would reappear, until Mrs Stevens sought medical help.
Visiting a minor injuries clinic the couple were told Joni was likely suffering from a haematoma – a build up of blood outside of the blood vessels.
Doctors told Mrs Stevens that if Joni was still suffering the pain six weeks later, they would need to take her back to see her GP. Around eight weeks later the family’s GP sent Joni for an X-ray.
Such is the rarity of Joni’s cancer, there are just two treatment options left on the NHS. Her mother said she fears the moment specialists will say there is nothing more they can do, is fast approaching.
Despite more than 20 rounds of chemotherapy, radiotherapy and one major operation, Joni ‘just gets on with life, never complaining’, her mother told MailOnline.
A RARE BONE CANCER AFFECTING THREE IN ONE MILLION PEOPLE
Ewing’s sarcoma is a type of bone cancer in children. Sarcomas are rare types of cancer that develop in the supporting tissues of the body.
There are two types, bone and soft tissue sarcomas.
Bone sarcomas can develop in any of the bones of the skeleton, but can also invade the soft tissue close to the bones.
In children, Ewing’s Sarcoma most commonly occurs in the long bones, ribs, pelvis and spine.
Fewer than 30 children in the UK are diagnosed each year.
And in the U.S. the disease affects around three in one million people each year, with the incidence in patients aged 10 to 19 years old rising to between nine and 10 cases per one million.
The average age of patients is 15, and more than 50 per cent are adolescents.
The disease is more common in boys.
The exact causes of bone cancer remain unknown.
Experts believe development of Ewing’s Sarcoma could be linked to rapid bone growth, explaining why so many cases are seen in teenagers.
Pain is the most common symptoms, but signs of the disease can vary depending on the position and size of the tumour.
There can be some swelling at the site of the tumour, if it is close to the skin’s surface.
Bone cancer is often diagnosed when a bone, weakened by the disease, breaks after a minor fall.
A combination of treatments are used to treat Ewing’s Sarcoma, including chemotherapy, surgery and radiotherapy.
Source: Macmillan Cancer Support and National Cancer Institute
Within days, Mrs Stevens arrived home to a note asking her to call the surgery.
‘At that stage we had no idea what it could be,’ she told MailOnline.
‘She had a fall in the playground and so we thought it was likely to be maybe a small fracture.
‘Never did we imagine, for one second, that it could be something so serious.’
In October the family were given the devastating diagnosis, Joni was suffering a very rare form of bone cancer, Ewing’s Sarcoma.
‘It was awful, absolutely dreadful,’ Mrs Stevens said. ‘Our world caved in on us at that moment.
‘We have gone through worse since then, but at that point, that was the worst thing doctor’s could have told us.’
Doctors immediately started Joni’s treatment plan. Over the course of the next year, she faced 14 gruelling rounds of chemotherapy.
And in February 2012 surgeons performed a major operation to remove Joni’s femur – thigh bone – and replaced it with an artificial bone.
Despite the intense treatment, Joni bravely got on with life, never once showing any signs of complaining.
Mrs Stevens, said: ‘She just gets on with it. She’s such a soldier, she just carries on.’
In September 2012 the family’s hopes were realised when doctors revealed Joni’s cancer was in remission.
‘We were ecstatic, it was absolutely amazing to be a real family once again,’ Mrs Stevens, also mother to four-year-old Daisy, told MailOnline.
‘We were a family-of-four again, rather than single parents of one child each.
‘It was lovely to be back together enjoying normal days again. We went on holiday for the first time in ages and Joni went back to school, which was so lovely for her.
‘We went back to work, life returned to normal.’
The charity Make A Wish granted Joni her wish, and she was whisked off to Walt Disney World in Florida.
But when she returned in November last year the pain returned.
Mr and Mrs Stevens have so far raised £60,000, holding cake sales, boxing matches, sponsored walks and even collecting drinks cans to crush and sell to the scrap yard for just pennies
Niggling aches and pains started to ring alarm bells with Mrs Stevens.
Joni had relapsed, specialists revealed her cancer had returned.
Mrs Stevens said hearing the disease was back was harder than her daughter’s initial diagnosis.
‘It was so much worse,’ she said. ‘It was worse than her actual diagnosis, it just gives you an idea of how everything just flipped turned upside down.
‘But while our world fell apart for a second time, Joni just got on with it.
‘She knew there was a job to be done, and she got on and did it. For everything bad that happened to her, every nasty treatment, we made sure we did something fun with Joni.
It was after visiting Walt Disney World in Florida in November 2013 that Joni started to complain of the tell-tale pain, the sign her cancer had returned ‘We had small trips away, and took the girls to Disneyland Paris, just to make up for all the rubbish they had to face.’
More chemotherapy was to come, but doctors told Mr and Mrs Stevens the five tumours growing on Joni’s spine, skull and ribs were inoperable. Such is the rarity of Joni’s disease, that specialists have told the couple their daughter has just two combinations of chemotherapy left before there will be nothing more they can do.
‘It is a case of wait and see,’ Mrs Stevens said. ‘Beyond that we just have no idea what Joni’s prognosis is. But there are only two options left.’ Desperate to seek alternative treatments for their daughter, the couple embarked on a huge challenge.
They are aiming to raise £150,000 to fund future alternative treatments, not available on the NHS, at specialist clinics abroad.
Mrs Stevens said at this stage they do not know exactly what the treatment will be, but said they have been warned any alternative procedures are likely to be very expensive.
She fears the moment is soon approaching when doctors will exhaust the options available on the NHS. ‘Whatever we can do to raise money, we are doing,’ she said. ‘Cake sales, boxing matches, ladies’ nights, Christmas parties, anything.
‘Joni’s grandma has made and sold loads of t-shirts and candles, her school friends made and sold loom bands, people have organised sponsored walks.
‘We even saved as many aluminium drinks cans as possible to take to the scrap yard in exchange for pennies. Anything we can raise we will.’
The family has so far raised a staggering £60,000, but are still short of their target.
‘We have been totally overwhelmed by the support we have had from friends, family and even strangers,’ Mrs Stevens said. ‘It is truly incredible and very humbling.’
Joni, pictured with her sister Daisy while having treatment, recently took part in a sponsored walk to raise money for her fund, despite having just started her 23rd round of chemotherapy
Her mother, Mrs Stevens, told MailOnline: ‘She just gets on with it. She’s such a soldier, she just carries on… We have been totally overwhelmed by the support we have had from friends, family and even strangers’
Joni’s school friends made and sold Loom bands to help support their classmate’s treatment
Family friend Pete Hurren, told MailOnline: ‘Joni is an amazingly positive little girl, and is being an absolute trooper while dealing with a disease that would crush the spirit of most adults.
‘She is incredibly inspiring, frankly, I am in awe of her. An example of her spirit is when we recently held a three-mile sponsored walk to raise money for her fund. Nobody expected to see her on this day as she had started a course of chemotherapy, her 23rd, earlier in the week.
She not only showed up, but insisted on taking part in the walk, walking to do two laps of the athletics track on crutches. She is incredible, her family are lovely and they are desperate. They are even collecting old drinks cans to crush and make money from, such is their devotion.
Joni speaks after her first lot of chemotherapy https://www.youtube.com/watch?v=uQIJlVTTgmU
Our aim is to raise as much money to support Joni through her ongoing journey. She is such an amazing little girl and we urge anyone who can to support her too.
If you would like to make a donation please use this link: www.gofundme.com/FortheLoveofJoni
Alternatively if you would like to box on our show and raise money for Joni please get in touch.
Follow Joni’s story here: www.joni-mai.co.uk
We are one family and we will do all we can.