Help our Dad get the treatment he needs!
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Help our Dad raise the funds to get the treatment he needs!!
Our Dad's story;
This is John - better known as, Dad, Grandad and J.W. to his friends. He lovingly lives for his 3 kids, and his 3 beautiful grandkids - to him - family is everything and he has lived by this motto his entire life. His dedication to his family is just one of the many reasons he is so deeply loved and respected.
Last October our dad was struck with rapid memory loss and severe confusion. Within 3 weeks he went from an independent hard working man to not even remembering where he lived.
It was a devastating and sudden shock to us all.
After numerous visits to the doctor's and multiple hospital visits to the A&E department he was misdiagnosed with depression. Not convinced of this we continued our fight for a true evaluation - back and forth to the doctors expressing our concerns meanwhile going into overdrive dealing with all that comes from watching a loved one deteriorate rapidly with what we assumed to be dementia.
After months of pure persistence our dad was referred to the mental health center and memory clinic to help confirm a suspected diagnosis of rapid dementia.
Although we were certain this was a symptom he was portraying, we still felt something was being missed and we were all so frustrated that more was not being done to get to the truth of the actual cause.
Dad was deteriorating by the day and started suffering terrifying hallucinations alongside what we now know to be - faciobrachial dystonic seizures which would haunt him, occurring at least 8 times a day.
He became unable to hold the simplest of conversations, to retain information, watching the television became extremely challenging, unable to wash, dress and feed himself. Sleep became a thing of the past as he would continue to have terrifying hallucinations and seizures all through the night. Dad became almost completely incapable of functioing all together, then came the worst part of all - not recognizing his children.
We started to grieve the dad we knew and love so dearly. It was heartbreaking to watch such a strong, intelligent, kind man, once head of our family be in so much pain from his own mind.
We persisted with multiple trips back to the G.P trips to the emergency room - many phone calls begging for help, yet the medical professionals were at a total loss as to what was wrong, how to help us or what to do next.
We were isolated and alone with no help or anywhere to turn. We felt we were failing our dad.
He was having severe psychosis - yet months went by and zero treatment for any of his symptoms.
It was literally torture to watch him suffer in so much pain - and not be able to treat, or do anything to soothe him or to even get a diagnosis as to what was wrong.
We felt helpless - it all seemed so unfair to be happening to our dad.
After multiple failed attempts to receive a correct diagnosis on the NHS, late February 2019 we paid to see a Private Neurologist which lead us to his correct diagnosis of 'Autoimmune Encephalitis'.
Simply put, Autoimmune Encephalitis is when the immune system attacks healthy brain cells leading to inflammation in the brain. Symptoms include; psychosis, memory loss, confusion, seizures, panic attacks, extreme anxiety, cognitive impairment, inability to speak and compulsive behaviors. If left untreated will lead to death.
Unfortunately Dads diagnosis came 5-6 months too late and he rapidly took a turn for the worse.
Within hours of being transferred to The Royal Free Hospital in London, the decision was made to put Dad into a medically induced coma in the intensive care unit as he was no longer able to breathe for himself. He was now fighting for his life and being monitored by the very highest level of critical care.
He unfortunately endured complications whilst in the coma such as pneumonia which got so bad his lungs were struggling to expand.
We, his children laid by his bedside day and night as the critical care team cared so diligently for dad and did everything they could. We knew he wasn’t just fighting for his own life, he was fighting for us too.
We would play him videos of his grandchildren hoping he would hear their sweet messages and play him music to help.
After a week of being in the coma nurses attempted to lift sedation, to see if he would be strong enough to breath by himself, however due to his mental state it was no easy task trying to match his natural breathing to the rhythm of the ventilation. But thankfully, dad having an immense willpower for his family, we began to see a slight glimmer of hope. We gave him the nickname 'The Ox' for his strength in coming through.
One of the worst parts of it all was seeing the terrified look in his eyes as he was coming out of his coma so confused not being able to talk or mentally comprehend what was happening to him.
Over a week of prayer and he was transferred to a high dependency ward for treatment. He stayed in hospital for 3 months with an extensive list of treatment - intensive but necessary, he would undergo various intravenous therapies, plasma exchange, physiotherapy and cognitive support therapy until he was finally discharged on 31st May 2019.
Dad is now at home, but he is far from recovered. He is on a concentrated high dose of medication which has terrible side effects which in turn lead to other health issues such as him now being diabetic with vast weight gain, exhaustion and a greatly suppressed immune system making him sussutable to severe illness and infection.
He is having to draw on strength and patience daily as he battles with his life of pain. He is able to communicate and has sparks of his memory forming back, but he is waiting for the day to have a glimpse of quality of life like he used to have.
There is a long road ahead, a year on from the start and he still battles with memory loss, confusion, exhaustion and all the side effects from the multiple medications that he is on. Due to his high dose of steroids he is unable to have a full knee replacement which he needs so desperately as he is unable to walk. He sits at home and battles with trying to work his mind again whilst feeling extreme exhaustion and being unable to walk, or travel anywhere.
He is trying relentlessly everyday to keep positive and I know for sure, the momentum of the love for his children and the pure love of his grandchildren is what keeps him going.
"Family is everything" he always says.
Because of dad's late diagnosis, his journey of Autoimmune Encephalitis has been more intense than most. He was lucky to survive, but the standard procedure of treatment for people with this illness unfortunately didn’t work like it should of or as we had hoped.
Our neurologist requested for a drug alternative which could give him hope for a better quality of life, but this has disappointingly been declined by the medical board of directors on the NHS.
So, here we are, trying to raise funds, not just for loss of earnings and the bills that come from the care taking - but most importantly, for the treatment that could see him be able to walk again come off steroids for good and have a life again.
We can only have hope - hope that he can beat this horrendous disease and not be in pain anymore, physically and mentally. Because, the man who is our hero and has lived to give his family everything, does not deserve this.
This man has a loyalty, a strength, a love so passionate that we are so indebted to him.
He has such a love for life, he loved going to work everyday, having a purpose, a huge passion for music, concerts, socialising with dear friends, old and new, and his dedicated love for Arsenal Football Club - being a season ticket holder for years. He loved going to the theater and visiting his young grandchildren who live in Los Angeles and we just cannot wait until we can share all of these things with him again.
This hardworking man deserves the best of everything, because thats all he gave to us for all his years so far.
We love you forever Dad.x.
We cannot thank everyone enough for taking the time to read our dads story, for your compassion, well wishes and kindness to donate.
Thank you.x.
For more information, volunteering stories or further donations please visit: www.encephalitis.info
#gofundme #gofundmecampaign #gofundmedonations #encephalitis #redditcharity #encephalitissociety
Our Dad's story;
This is John - better known as, Dad, Grandad and J.W. to his friends. He lovingly lives for his 3 kids, and his 3 beautiful grandkids - to him - family is everything and he has lived by this motto his entire life. His dedication to his family is just one of the many reasons he is so deeply loved and respected.
Last October our dad was struck with rapid memory loss and severe confusion. Within 3 weeks he went from an independent hard working man to not even remembering where he lived.
It was a devastating and sudden shock to us all.
After numerous visits to the doctor's and multiple hospital visits to the A&E department he was misdiagnosed with depression. Not convinced of this we continued our fight for a true evaluation - back and forth to the doctors expressing our concerns meanwhile going into overdrive dealing with all that comes from watching a loved one deteriorate rapidly with what we assumed to be dementia.
After months of pure persistence our dad was referred to the mental health center and memory clinic to help confirm a suspected diagnosis of rapid dementia.
Although we were certain this was a symptom he was portraying, we still felt something was being missed and we were all so frustrated that more was not being done to get to the truth of the actual cause.
Dad was deteriorating by the day and started suffering terrifying hallucinations alongside what we now know to be - faciobrachial dystonic seizures which would haunt him, occurring at least 8 times a day.
He became unable to hold the simplest of conversations, to retain information, watching the television became extremely challenging, unable to wash, dress and feed himself. Sleep became a thing of the past as he would continue to have terrifying hallucinations and seizures all through the night. Dad became almost completely incapable of functioing all together, then came the worst part of all - not recognizing his children.
We started to grieve the dad we knew and love so dearly. It was heartbreaking to watch such a strong, intelligent, kind man, once head of our family be in so much pain from his own mind.
We persisted with multiple trips back to the G.P trips to the emergency room - many phone calls begging for help, yet the medical professionals were at a total loss as to what was wrong, how to help us or what to do next.
We were isolated and alone with no help or anywhere to turn. We felt we were failing our dad.
He was having severe psychosis - yet months went by and zero treatment for any of his symptoms.
It was literally torture to watch him suffer in so much pain - and not be able to treat, or do anything to soothe him or to even get a diagnosis as to what was wrong.
We felt helpless - it all seemed so unfair to be happening to our dad.
After multiple failed attempts to receive a correct diagnosis on the NHS, late February 2019 we paid to see a Private Neurologist which lead us to his correct diagnosis of 'Autoimmune Encephalitis'.
Simply put, Autoimmune Encephalitis is when the immune system attacks healthy brain cells leading to inflammation in the brain. Symptoms include; psychosis, memory loss, confusion, seizures, panic attacks, extreme anxiety, cognitive impairment, inability to speak and compulsive behaviors. If left untreated will lead to death.
Unfortunately Dads diagnosis came 5-6 months too late and he rapidly took a turn for the worse.
Within hours of being transferred to The Royal Free Hospital in London, the decision was made to put Dad into a medically induced coma in the intensive care unit as he was no longer able to breathe for himself. He was now fighting for his life and being monitored by the very highest level of critical care.
He unfortunately endured complications whilst in the coma such as pneumonia which got so bad his lungs were struggling to expand.
We, his children laid by his bedside day and night as the critical care team cared so diligently for dad and did everything they could. We knew he wasn’t just fighting for his own life, he was fighting for us too.
We would play him videos of his grandchildren hoping he would hear their sweet messages and play him music to help.
After a week of being in the coma nurses attempted to lift sedation, to see if he would be strong enough to breath by himself, however due to his mental state it was no easy task trying to match his natural breathing to the rhythm of the ventilation. But thankfully, dad having an immense willpower for his family, we began to see a slight glimmer of hope. We gave him the nickname 'The Ox' for his strength in coming through.
One of the worst parts of it all was seeing the terrified look in his eyes as he was coming out of his coma so confused not being able to talk or mentally comprehend what was happening to him.
Over a week of prayer and he was transferred to a high dependency ward for treatment. He stayed in hospital for 3 months with an extensive list of treatment - intensive but necessary, he would undergo various intravenous therapies, plasma exchange, physiotherapy and cognitive support therapy until he was finally discharged on 31st May 2019.
Dad is now at home, but he is far from recovered. He is on a concentrated high dose of medication which has terrible side effects which in turn lead to other health issues such as him now being diabetic with vast weight gain, exhaustion and a greatly suppressed immune system making him sussutable to severe illness and infection.
He is having to draw on strength and patience daily as he battles with his life of pain. He is able to communicate and has sparks of his memory forming back, but he is waiting for the day to have a glimpse of quality of life like he used to have.
There is a long road ahead, a year on from the start and he still battles with memory loss, confusion, exhaustion and all the side effects from the multiple medications that he is on. Due to his high dose of steroids he is unable to have a full knee replacement which he needs so desperately as he is unable to walk. He sits at home and battles with trying to work his mind again whilst feeling extreme exhaustion and being unable to walk, or travel anywhere.
He is trying relentlessly everyday to keep positive and I know for sure, the momentum of the love for his children and the pure love of his grandchildren is what keeps him going.
"Family is everything" he always says.
Because of dad's late diagnosis, his journey of Autoimmune Encephalitis has been more intense than most. He was lucky to survive, but the standard procedure of treatment for people with this illness unfortunately didn’t work like it should of or as we had hoped.
Our neurologist requested for a drug alternative which could give him hope for a better quality of life, but this has disappointingly been declined by the medical board of directors on the NHS.
So, here we are, trying to raise funds, not just for loss of earnings and the bills that come from the care taking - but most importantly, for the treatment that could see him be able to walk again come off steroids for good and have a life again.
We can only have hope - hope that he can beat this horrendous disease and not be in pain anymore, physically and mentally. Because, the man who is our hero and has lived to give his family everything, does not deserve this.
This man has a loyalty, a strength, a love so passionate that we are so indebted to him.
He has such a love for life, he loved going to work everyday, having a purpose, a huge passion for music, concerts, socialising with dear friends, old and new, and his dedicated love for Arsenal Football Club - being a season ticket holder for years. He loved going to the theater and visiting his young grandchildren who live in Los Angeles and we just cannot wait until we can share all of these things with him again.
This hardworking man deserves the best of everything, because thats all he gave to us for all his years so far.
We love you forever Dad.x.
We cannot thank everyone enough for taking the time to read our dads story, for your compassion, well wishes and kindness to donate.
Thank you.x.
For more information, volunteering stories or further donations please visit: www.encephalitis.info
#gofundme #gofundmecampaign #gofundmedonations #encephalitis #redditcharity #encephalitissociety
Organizer
Leanne Whallett
Organizer
Los Angeles, CA