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Letter from the Pope gave Renfrew man 'hope' to fight rare genetic brain disease

Letter from the Pope gave Renfrew man 'hope' to fight rare genetic brain disease

Daily Record26-04-2025
A Renfrew man with a unique connection to Pope Francis has told how he believes the Pontiff's funeral today will be a sad but special occasion. Michael Conway was diagnosed nine years ago with Adrenoleukodystrophy (ALD), a degenerative neurological condition which affects mobility and thought processes, and causes fatigue. Seeking support and to raise awareness of the condition, which affects just one in 25,000 men in the UK, he wrote to Pope Francis two years ago. He was unsure what reply, if any, he would get – and was astonished and thrilled to receive a letter, photograph and blessed Rosary beads on behalf of the Pontiff. Michael, 58, said: 'I felt honoured to receive the blessing of Pope Francis. It has made facing my disease easier knowing that His Holiness remembered me in his prayers. 'I felt genuinely sad when I learned Pope Francis had passed away. We knew he had been unwell for a while, but there are some people you just expect to live forever and, when you saw him speak on Easter Sunday, you thought that would be the case with him. 'On Monday, I heard that he had passed away and it was just the most awful feeling. People have said to me about how good a man he was, and how caring he was. 'I thought, with my letter and Rosary beads, that I have the ultimate proof that's true. They are such a special thing for me and I keep them in a safe place. I will watch the funeral and it will be a sad but special occasion.' Michael's letter is signed by Monsignor Roberto Campisi on behalf of Pope Francis, and states: 'His Holiness Pope Francis has received your letter and has asked me to reply in his name. 'He appreciates the concern which prompted you to write to him. His Holiness will remember you and your family in his prayers. As a pledge of strength and peace in the Lord Jesus Christ, he sends his blessing.' Michael said: 'Receiving the letter and Rosary beads from Pope Francis meant an awful lot to me. I was very pleasantly surprised. I received this small package in the post with no idea who it was from. 'It was a little thicker than the average letter and, thankfully, I opened it carefully. I was amazed at the contents. For a wee guy living in Renfrewshire it was pretty special.' Michael was diagnosed with ALD in 2016 and is determined to help others in his position. He became an ambassador for managing ALD in employment and aims to show people can still contribute in the workforce despite health issues. He said: 'I work and try to live as normal a life as possible. I need to keep active or I will fall asleep but I am fortunate to have a great and supportive employer in BAE Systems. 'I have worked there for 23 years and they have been so helpful to me. I really appreciate what I've got with them.' ALD is a rare genetic brain disease which affects the central nervous system. Symptoms include chronic fatigue, slower speed of processing, and balance and mobility issues. ALD can be life-threatening and there is no cure. It mostly affects males, although females can be carriers of ALD. Help and information on ALD is available at alextlc.org Don't miss the latest Renfrewshire headlines – you can sign up to our free daily newsletter here
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