A FAMILY is desperate to raise funds to prevent their loved one from living the rest of his life in pain following a terminal cancer diagnosis.
Johnathan Kirby, 37, from Waltham Abbey was diagnosed with stage four brain cancer just before Christmas, leaving his family in complete shock.
He has a fiancé, Mary-Jane, a daughter Aurora and another baby girl due in March.
He was diagnosed with a rare genetic disorder, Neuro-Fibromatosis Type I, when he was just a child and has since had regular check-ups.
More recently, he was hospitalised with a suspected stroke which was later found to be stage four brain cancer.
The doctors think he has been misdiagnosed for about six months.
Johnathan’s sister, Nicole Dulake, said: “His condition means his nerve endings are susceptible to tumour groups and doctors think an initial tumour may have turned into something sinister more recently.
“This diagnosis has been soul-destroying.
“Since treatment to remove cancer from his brain, he no longer has, what they call, the capacity to make decisions by himself.
“He can’t consent himself which is making it difficult to approve treatments.
“The chemotherapy and radiotherapy are usually done together but he cannot approve the radiotherapy treatment.”
His family have set up a Go Fund Me to help fund treatment which could improve his quality of life.
Nicole said: “We are trying to raise funds for a treatment called Optune which is an electronic headgear which can help inhibit cell growth.
“Optune isn’t available on the NHS. It can extend his life expectancy, even triple it.
“If we can raise enough for one month’s treatment, we can take it back to the oncologist to say let's try and get some funding behind this.
“If he could get this treatment it would be phenomenal. He could live the rest of his life pain-free. It would mean the world.
“He is not one in a million- there are lots out there in the same situation who don’t have a voice- they are an at-risk population. We hope to raise awareness of the condition.”
For more information, or to donate, go to https://www.gofundme.com/f/Help-Johnathan-Fight-Brain-Cancer?utm_campaign=p_lico+share-sheet&utm_medium=copy_link&utm_source=customer.
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