FAMILY and friends have launched a fundraising campaign for a brave borough man who is battling a deadly illness.
James Kinyanjui has a rare genetic condition called Familial Amyloid Cardiomyopathy (FAC) which causes abnormal protein deposits to form on his heart, kidneys and nervous system.
Most people with the condition, which damages tissue and affects how internal organs work, usually die within a year.
Doctors are amazed that father of three James from Winnersh has survived for over two-and-a-half years, although he has been forced to give up his job and is in constant pain.
Treatment for FAC is not available on the NHS although the world famous Mayo Clinic in America is one of the few places in the world able to stabilise the illness.
Now family and friends have started a fundraising campaign to raise the £25,000 cost for the treatment and have already reached the £3,000 mark.
“I was diagnosed in March with Familial Amyloid Cardiomyopathy after two-and-a-half years of doctors not being able to tell me why I was constantly ill,” explained James, 61.
“They just didn’t know what was wrong with me. I had a feeling I might have FAC but wasn’t sure so they sent me for tests to the National Amyloidosis Centre in London which is the only one of its kind in the UK.”
James said every part of his life has been affected by the condition. He is thankful for the support of his wife, Agnes, and his son, Denis, who lives with them.
“I used to be a very active person regularly going jogging and swimming and I have always worked,” added James.
“I was a housing officer and loved my job but as my symptoms got worse, I had to give it up. I was taking lots of pain killers although they only provided temporary relief.
“Over time, I suffered terrible heart pain, huge weight loss, leg swelling, dizziness, fatigue, nausea, diarrhoea and carpal Tunnel Syndrome.
“Although I tire easy, I suffer from interrupted sleep and have difficulty with everyday simple tasks because I have poor hand grip and mobility.”
FAC is most common in Africa and south east Asia although there is a high incidence in Northern Ireland.
James also has two grandchildren has lived with wife Agnes in Winnersh for the past four years.
The couple are both active members of St Andrew’s United Reformed Church, London Road, Reading, where Agnes is an elder.
“Agnes takes great care of me,” added James.
“I can no longer drive and if it wasn’t for her, I don’t know what I’d do. We are both humbled that people in the village and elsewhere have started this fundraising campaign to send me to America for treatment. I can’t thank them enough.”
Bob Purdom, joint Church Secretary for St Andrew’s, said: “The church family is pleased to support a fundraising event for James Kinyanjui’s Medical Bill on Sunday, June 10, at Our Lady of Peace Church hall in Earley, Reading.
“James and Agnes are an important part of our multicultural St Andrew’s church family.
“In St Andrew’s, various fund raising activities are being planned and donations will be collated at a special morning service on June 10 and presented at the Our Lady of Peace event.
“Minister, John Downing thanked Church members and those from other churches communities around Reading their support for James and his family. We ask that those readers of The Wokingham Paper hold James and his family in their prayers at this time.”
The fundraiser for the James Kinyanjui – Medical Bill Appeal has been organised at 3pm on Sunday, June 10 at Our Lady of Peace Catholic Church, Wokingham Road, Earley.
Other events are being planned and donations can also be made at www.gofundme.com/james-kinyanjui-medical-appeal
You can also make a donation at a special account set up with the Nat West Bank. The sort code is: 60.17.21 and the account number is: 89553128
