Bernie Cannon-Cunningham and Eibhlin Cunningham are from Letterkenny, Donegal.
“Amyloidosis burst into our lives in 2017. Until then, we had been tormented and bewildered as to what could be wrong with our mum,” they say.
Their mum, Evelyn Cunningham, “had started to become ill around 2013.”
By 2015, Evelyn was five and a half stone with a range of frightening, painful, and debilitating symptoms. One consultant declared her case “a mystery.”
No one was able to diagnose her cluster of symptoms. At one point, a doctor suggested that Evelyn needed to see a psychiatrist, as there was a probability her health difficulties were “all in her head.”
In an attempt to do something, one doctor arranged for Evelyn to have a TPN feed and Evelyn was one of the first patients in Donegal to have this treatment. TPN stands for Total Parenteral Nutrition and is a method of feeding that bypasses the gastrointestinal tract.
They give fluids into a vein to provide most of the nutrients the body needs. The method is used when a person should not or cannot receive fluids or food by mouth. It is prescribed for patients who do not have a functioning gastrointestinal tract or who have disorders requiring complete bowel rest.
Eibhlin and Bernie say of their mum’s treatment with TPN, “It probably extended her life for about 18 months.”
“Looking back now,” they say, “you could argue if that was a good thing or not for all she still had to go through. Mum wasn’t ready to leave her family. She fought and hung on like the lioness she was.”
Around Christmas 2016, “Mum began to lose the feeling in her feet. So, out the wheelchair came. Nothing would beat her. She kept going.”
Shortly thereafter, Evelyn came under the care of another doctor. This doctor had treated her aunt, Martha, and great-aunt to Bernie and Eibhlin. This doctor diagnosed Martha with amyloidosis.
“Martha had not told us as she didn’t realise it was hereditary,” recount Eibhlin and Bernie.
It was this new doctor that suspected a connection and arranged for genetic testing for their mum. The genetic testing “took weeks as there was some delay over payment issues.” Then, the diagnosis was confirmed—hereditary amyloidosis Thr60Ala.
Evelyn and Bernie
“We finally had our answers, but our nightmare was only just beginning. We couldn’t bear to tell mum the illness was terminal. Instead, we told her the doctor was sending her to London to the National Amyloidosis Centre where she could try a new treatment they were working on.”
Bernie and Eibhlin say, “Our mum was excited and hopeful about going to London, but it was not meant to be. A few more weeks went by. Martha died. And within eight weeks of Martha dying, mum was gone too.”
Eibhlin and Bernie continue, “Our mum passed away on 3 June 2017 at home with her family. She was 62 years of age.”
“We will never get over it. She did not want to leave us. She fought to the bitter end and did not give up. Her body did. We were left reeling that there had been no hope for mum. We were left reeling that there was then no hope for anyone else who might get sick with this illness.”
Speaking in 2021, Bernie and Eibhlin said, “Now, we are facing a different battle. There is a glimmer of hope with new treatments. We need to fight for treatment of what is an Irish disease in our lovely Ireland.”
Their contribution to the campaign for treatment played a significant part in Patisiran being available in the Republic of Ireland from 1 October 2021.
Eibhlin and Bernie are both mothers.
They made their respective decisions to have genetic testing.
Both have inherited the gene for Donegal Amy.