A social media appeal to fund a potentially life-saving drug for a Crowborough boy has left his parents ‘overwhelmed’ after more than £20,000 was raised within 24 hours.
Frankie Cheek, aged three, has been able to ‘enjoy a normal life’ since taking Neulasta, as part of his specialised cancer treatment in the US. The drug helps his body fight infection, something he is particularly vulnerable to while undergoing chemotherapy.
It means he can now go into public places as the risk of contracting a life-threatening bug is significantly reduced.
He first received the drug in October while being treated in the US on a trip that was paid for by the NHS, and included travel and treatment. The drug Neulasta is not available on the NHS in the UK. Additionally, his treatment involved proton radiation therapy, which is also unavailable in the UK.
Since taking the medication, he has ‘never been so well’, according to his mother, Catherine Cheek. Seeing the huge impact the drug had on Frankie’s quality of life, the family decided to turn to social media in November to help fund it once they returned to the UK in December.
The reaction they received went far beyond their expectations.
“We are totally overwhelmed by the amount of money that has been raised, and in such a short space of time,” said Mrs Cheek. “We set the page up late at night, not expecting much to happen straight away, but when we woke in the morning it was already up to £6,000.”
And after the initial flood of activity, with the £20,000 target being broken in the space of a day, the contributions have kept on coming. Currently, a total of £32,705 has been raised from nearly a thousand donors.
Frankie entered into his penultimate round of chemotherapy last week, taking his first dose of community-funded Neulasta on Friday [January 6]. His last cycle is expected at the end of the month.
In July 2016, at the age of two, Frankie was diagnosed with Rhabdomyosarcoma, a rare cancer of the muscle. Fewer than 60 children are diagnosed with the disease in the UK each year. It resulted in the growth of a large tumour in his nasal cavity and behind his eye. The growth is inoperable and has resulted in the loss of vision behind his right eye.
Parents Catherine and Andrew were told the cure rate is 60 to 70 per cent.
After continual cycles of chemotherapy every three weeks over the summer in London, they took a bold decision.
The pair left their jobs and uprooted their family, including six-year-old daughter Layla, to fly to Oklahoma City in October to enrol Frankie in a treatment programme that is unavailable in the UK. Andrew owns his own painting and decorating company while Catherine works as a sales assistant at a Jarvis Brook electronics firm.
Unlike conventional radiotherapy, which uses X-rays to destroy cancer cells, proton radiation therapy stops once the rays hit the targeted cell, meaning much less damage to the significant tissue.
During their nine weeks in the US, Frankie was given Neulasta as part of his treatment, and according to his mother it has had a transformative impact.
“It has enabled Frank to be in public places he hasn’t been in: Shops, supermarkets, school run, parks, nursery school – in fact anywhere public. With this superdrug, he has never been so well. He has enjoyed the normal life any other three year old,” she said.
Despite undergoing intense medical therapy, the children apparently treated the US visit as ‘one big holiday’. The therapy centre organised outings for the family, including Frankie’s ‘dream trip’ of riding on a fire engine.
Frankie will face challenges in the future, but the generosity of the local community has ensured his family will have the funds to help him, with money already being set aside for regaining Frankie’s sight and counteracting some of the side effects on his development from the proton therapy.
- To donate and read updates on Frankie’s progress, visit: www.gofundme.com/thumbs-up-for-frankie