A mother's desperate last chance for a future with her children
PUBLISHED: 06:00 20 January 2019 | UPDATED: 08:39 21 January 2019
Heather Bellamy is 48 and she might not see 50 unless her family can raise £200,000 to send her to America for life-saving treatment.
Ms Bellamy, who has lived in Downham Market since she was 11, has been battling terminal Acute Myeloid Leukaemia (AML) for four years.
After her body rejected two stem cell transplants, doctors say there is nothing more they can do for her.
But a new drug available in America, which is not yet licensed here, could save her life if she could afford it.
“It will allow us all to imagine a future together,” she said. “It will mean I can be there to support my children Elizabeth (24), Alice (22), Alfie (16), and Sam (14) in the bad times and share the joy with them in good times.
“I take the responsibility of being a mum very seriously. It’s hard to think I will have to leave them in order to obtain a drug in another country when trials are already happening here in the UK but none that I am eligible to access. I am desperate and that is why I am prepared to go to America.”
Ms Bellamy first came across the drug, Enasidenib, when she joined a Facebook support group for people undergoing stem cell transplants, and after some research found it is proving successful.
“Acute myeloid leukaemia is a very complex disease and not as well understood as some other cancers,” Ms Bellamy added. “There seem to be many different mutations that can lead to AML but not so many treatments for these subtle subdivisions and what this breakthrough drug gives is real tangible hope and sometimes with this disease that is all you have.”
When she was first diagnosed, Ms Bellamy was a full-time nurse, caring for four children and had no signs or symptoms. Telling them was the worst part.
Ms Bellamy said: “Initially I suppose I was numb, in a state of disbelief and once treatment started I didn’t think for a moment that this wasn’t fixable. I was fit, healthy and strong.
“My youngest, who was 10 years old, would be distraught every time I had to go into hospital and by the end of my first treatment I felt like I’d been run over by a steam roller, but I fought back and thought I’d won. I was wrong.”
Four years on, having endured two failed transplants the only option is looking costly and uncertain.
“Going to America will be costly, and I don’t just mean financially,” Ms Bellamy added. “I have worked for the NHS for 27 years and believe in it absolutely but these last few months I have wavered in that belief and I feel sad that it may not be the service I thought.
“We haven’t tested it but others have and it appears to be helping, you take that medication because the only other option is certain death and leaving an unfillable gaping hole in the lives of four beautiful, kind, intelligent people.
“I’ve seen bereaved families lose their way and fall through the cracks of life. I do not want that for my children and I will fight with all that I have.”
For now, life carries on, but with each passing day the need to get to America becomes more desperate and day-to-day life becomes more difficult.
Ms Bellamy said: “Right now it’s uncertain and frightening, while at the same time being filled with joy at my children’s presence, their achievements and being able to be involved in their lives. To hold them, guide them and advise them when they need me. I cherish every single moment, good and bad.
“The nagging doubt of my being able to continue sharing this with them and their futures freezes, terrifies and angers me. Their suffering will continue long after mine if I cannot be cured and I carry that guilt with me but it also gives me unimaginable strength to carry on.
“The doctors won’t give me an answer on lengths of time, AML is difficult to predict, but when drugs stop working it is a very aggressive disease. Palliative care has been raised but I’m just not ready to face that yet.”
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