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After a long fight our brave and wonderful Dad fell asleep at home with his girls by his side on 15th June 2021.
Dad first fell poorly in 2019 and was admitted to Leighton Hospital. After weeks of deterioration without a diagnosis he was then transferred to the neurology department at The Royal Stoke. He underwent numerous tests, treatments and scans with no improvement before a referral was made to the specialist Ataxia unit at The Royal Hallamshire in Sheffield. Dad was seen by Professor Hadjivassiliou who was a specialist in progressive Ataxias and was later diagnosed with Immune Mediated Cerebellar Ataxia. Despite numerous attempts at different treatments his condition continued to deteriorate.
Unfortunately alongside the damage that was caused to the cerebellum, in January 2021 we received the devestating news that Dad had Squamous Cell Carcinoma of the throat.
Through all that he had faced already over the previous 18 months, Dad was advised against taking treatment for his Cancer but he chose to not give up fighting and went on to endure an intense bout of radiotherapy.
Following this treatment, Dad continued to deteriorate and after numerous consultations & the support of his community care team we were able to fulfil Dads final wish which was to be cared for at home surrounded by his family. Initially we were advised that Dad only had days when we brought him home… and yet those days turned into weeks and those weeks have left us with wonderful memories that we will cherish forever.
Throughout the whole time that Dad was poorly he always stayed positive, he continued to smile on a daily basis and he never lost his cheeky sense of humour.
As a family we have been through a range of emotions. We had never heard of Ataxia before Dads diagnosis but we also found that neither had multiple Drs that Dad had been under before his referral to Sheffield. We will never know if a difference could have been made if Dad had received an earlier diagnosis.
Greater awareness of this illness may help someone in the future receive an earlier referral to a specialist and hopefully ensure that their family avoids the heartache we have endured.
What is Ataxia?
We have learnt since Dads diagnosis that there are multiple different ataxias and they are a group of rare degenerative neurological disorders, characterised by progressive symptoms that impact co-ordination, hearing, balance, vision, and speech.
More information about Ataxia UK: Ataxia UK is the leading UK charity for all people affected by ataxia. We fund world-class medical research to identify causes and treatments. We help people to live with the condition by providing services, information and support that are not available elsewhere.
Dad first fell poorly in 2019 and was admitted to Leighton Hospital. After weeks of deterioration without a diagnosis he was then transferred to the neurology department at The Royal Stoke. He underwent numerous tests, treatments and scans with no improvement before a referral was made to the specialist Ataxia unit at The Royal Hallamshire in Sheffield. Dad was seen by Professor Hadjivassiliou who was a specialist in progressive Ataxias and was later diagnosed with Immune Mediated Cerebellar Ataxia. Despite numerous attempts at different treatments his condition continued to deteriorate.
Unfortunately alongside the damage that was caused to the cerebellum, in January 2021 we received the devestating news that Dad had Squamous Cell Carcinoma of the throat.
Through all that he had faced already over the previous 18 months, Dad was advised against taking treatment for his Cancer but he chose to not give up fighting and went on to endure an intense bout of radiotherapy.
Following this treatment, Dad continued to deteriorate and after numerous consultations & the support of his community care team we were able to fulfil Dads final wish which was to be cared for at home surrounded by his family. Initially we were advised that Dad only had days when we brought him home… and yet those days turned into weeks and those weeks have left us with wonderful memories that we will cherish forever.
Throughout the whole time that Dad was poorly he always stayed positive, he continued to smile on a daily basis and he never lost his cheeky sense of humour.
As a family we have been through a range of emotions. We had never heard of Ataxia before Dads diagnosis but we also found that neither had multiple Drs that Dad had been under before his referral to Sheffield. We will never know if a difference could have been made if Dad had received an earlier diagnosis.
Greater awareness of this illness may help someone in the future receive an earlier referral to a specialist and hopefully ensure that their family avoids the heartache we have endured.
What is Ataxia?
We have learnt since Dads diagnosis that there are multiple different ataxias and they are a group of rare degenerative neurological disorders, characterised by progressive symptoms that impact co-ordination, hearing, balance, vision, and speech.
More information about Ataxia UK: Ataxia UK is the leading UK charity for all people affected by ataxia. We fund world-class medical research to identify causes and treatments. We help people to live with the condition by providing services, information and support that are not available elsewhere.
Organizer
Ataxia UK
Beneficiary