A Co Antrim family are appealing for help after their eight-year-old daughter was diagnosed with Ewing’s Sarcoma.
Emma McNeilly, from just outside Ballymena, was diagnosed in June 2021, with mum Petra and dad Paul's life being turned upside down.
Emma loves playing with her siblings, Adam, nine, Daniel, six, and five-year-old Anna - and has been described as a being a "superhero" to her little sister.
Her mum Petra said the treatment the child is currently on is an experimental metronomic chemotherapy, aiming at delaying progression.
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She told Belfast Live : "This was a strange case as Emma's only symptom was a limp and later on swelling, but that was last moment. This disease usually presents considerable pain."
A Go Fund Me page set up by family friend Louise reads: "Emma has a rare and brutal cancer and is in desperate need of a miracle, which maybe we can all help with...
"In 2021, life dealt Emma a horrific blow. Something, as a parent, is inconceivable. Emma was diagnosed with Ewing’s Sarcoma, a rare and poorly understood cancer which occurs in children normally in one of their limbs. Tragically this cancer had metastasized to Emma’s lungs and spine too.
"The world of the family has been turned upside down, filled with pain, agony and desperation [that] most of us are lucky not to know. Within two weeks, Emma started chemotherapy. Fourteen two-week cycles, about 100 infusions of poisonous drugs with horrific side effects, for the next seven months.
"By the third cycle, Emma’s lovely long blonde hair was gone and the list of procedures and treatments just seemed to grow and grow – daily hormone injections, blood transfusions, drugs to fight the side effects of drugs, flushes, pokes, scans, 40 sessions of radiation with horrible burns... and all that in isolation, due to Covid.
"The family torn apart with Petra practically living in the hospital with Emma, while Paul took care of the other three at home.
"No visits allowed, the separation hit Emma and the rest of the children real hard. No one should go through this, and especially no innocent child."
Louise added: "Emma’s gruelling treatment to date has done a good job of eradicating the cancer in her femur and spine with no spread anywhere else or signs of progression to date. Emma however is left with a number of small residual lung lesions that did not clear completely and these are extremely likely to still be active and progress in the near future.
"It is a heart-breaking situation...
"The problem faced is that treatment for residual lung lesions is not a standard of care in Ewing’s sarcoma in the UK yet..."
The family want to get Emma's lungs treated, to give her "a chance to live" and to be able to "spend more precious time together" - but are appealing for donations to make this possible.
The McNeillys want this to happen as soon as they can.
Petra said: "This disease progresses very, very quickly and usually around one year from diagnosis is the most common time that everything starts going very wrong.
"We are on a restricted schedule."
The fundraising page continued: "As one of Emma’s residual lesions is in a difficult position close to her heart, treatment may only be achieved by stereotactic radiation and advanced equipment such as Gamma and Cyberknife which, in Emma’s case, are not available through the NHS with no private providers in the UK or Ireland willing to treat paediatric cancer patients.
"The family has thus reached out to hospitals and specialist radiation centres abroad for such treatments...
"Such treatments however cost tens of thousands, there are also consultation and travel costs. While the family are using every resource they have, it is simply not enough, and it is why I’m reaching to you for help.
"Every penny of your kind donations would go against these costs and every penny counts. It would give Emma the best chance at life, a chance to be the happy little girl she should be and to fulfil her dreams in the future. A chance for the family to stay complete and for the three other children not to be harmed for the rest of their lives by losing their beloved sister, a chance for the parents not to bury their daughter.
"It is a hope for something the family could never have imagined they would have to hope for, life of their little child."
Petra has thanked all of the doctors and nurses who have been looking after her daughter over the past 11 months.
She told Belfast Live: "They have been brilliant. They have been absolutely fantastic, really.
"Our consultant is the most wonderful person I have ever met in my life. I really am grateful.
"We are also absolutely grateful for those who have donated so far.
"The fundraiser is for £25,000, that is by no means going to cover this but it is a starting point.
"The disease is so unpredictable... If this doesn't work for whatever reason, we want the money to go back to the donors or if they agree, go to a different child in a similar situation."
The Co Antrim woman added that even if you aren't able to donate, the family equally appreciate the public spreading the word.
Petra has also told how proud she is of Emma.
"Emma is a family orientated girl. She is shy but sociable... What she has been through, it would break your heart to see it, she has done so amazing.
"There have been very low moments. So proud of her, so amazed. I wish I had her strength," the Ballymena mum added.
Around £6,000 has been raised to date. To visit the fundraiser, CLICK HERE.
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