An Aberdeen woman is raising £65,000 to send her sister to India for a life-saving bone marrow transplant.
Caroline Bett received the heartbreaking news that her sister Janet Karoney has been diagnosed with a rare bone marrow failure earlier this month.
The news was especially hard to hear as Mrs Karoney lives almost 7,000 miles away in Nairobi.
Miss Bett moved to Aberdeen in 2006 to work in the oil and gas industry, and admitted that hearing her sister’s devastating severe aplastic anaemia diagnosis over the phone was hard to take – especially since the family have not all been together for two years due to Covid.
“It is horrible not being able to be with them or with her, it is just hard and obviously with Covid I would normally go and see them in December,” she said.
“So it has been almost two years since I was back to visit – it is horrible.”
Within a few weeks, hopes that Mrs Karoney’s condition could be managed by medication faded and she now undergoes weekly transfusions.
In the meantime, the race is on to find a donor as one in seven people die from the rare condition within the first year.
One in seven die within a year
Miss Bett is currently awaiting test results to see if she is a donor match, but her three other siblings results have already come back at just a 50% match.
A 100% match is needed to ensure best results and Miss Bett’s family may need to go to the global donor list to secure a transplant, but time is an issue.
Mrs Karoney has now flown out to India to begin early stages of treatment after finding out the the specialist procedure wasn’t available in Kenya – while doctors in the UK quoted upwards of £150,000.
However the treatment in India allows the family to “pay as they go” and comes in at around £65,000.
“I am raising to help from Aberdeen and my family in Kenya are also raising. A lot of it is goodwill and friends who have just been so generous,” Miss Bett said.
“Janet is just normally a very happy person, a lot of the time she is just giggling and making jokes all the time.
‘This is not a laughing matter – this is really serious’
“In fact, when she first told us about this she was laughing initially and I had to tell her this is not a laughing matter – this is really serious.
“I checked on Google and saw the fatality rate and messaged her to say this is really scary why are you laughing about it but she is just generally a happy person.
“She is a mum to a 20-month-old and she is absolutely distraught about having to leave her daughter behind to go for this treatment.”
After the transplant, Mrs Karoney will need to stay in India for six months of monitoring.
If Miss Bett is a match, she will fly out to India to get the procedure for her sister.
If not, an alternative treatment called ATG is available while doctors scour the global donor list.
“Her condition is also described as bone marrow failure so typically her bone marrow is not producing enough blood so we need to do either the transplant or an interim until a transplant is available,” Miss Bett said.
‘Her case is so severe’
“The alternative procedure only has a 60 % success rate and she would need to be on medication for another two years because her case is so severe. If none of us are a match then we will go ahead with that procedure.
“It is not 100% successful but it would give us that breathing space because she is getting transfusions now every eight to 10 days and the doctors has advised that ideally she won’t have more than 15 transfusions because it might impact the success rate of any future treatments.”
So far, the family have raised around £15,000 which is enough to get Mrs Karoney started on treatment.
However, they are still relying on donations to ensure their sister can get the life-saving bon marrow transplant – whether it come from a sibling or the global donor list. You can donate by clicking here.