Elaine's Coast2Coast Challenge
Charlotte Conn is raising money for Huntington's Disease Association
Story
Hello, my name is Charlotte, I am posting and managing this fundraising page on behalf of my amazing mum, who is doing the Coast2Coast, she's going to be walking the distance, with the help of my dad, family and friends. Here is her inspiring story:
'Before you read my story, I’d like people understand my love for life
and my sheer gratefulness for being able to share this with you. I’m a little apprehensive to tell my story, but I know this will help lots of other families as well as raise awareness for HD in the bid to find a cure.
My name is Elaine as some of you may know, I’m the mother of a crazy,
beautiful family. I have 2 beautiful girls, a lovely step son, 3 dogs, 3 cats and an incredibly caring husband (it’s a mad house, I know!)
Huntington’s Disease is a rare neurodegenerative disease, which effects around 8,000 people in UK, me being one of them. HD is an incurable and fatal hereditary disease which occurs due to mutation in chromosome 4 which slowly kills neurons in multiple areas of the brain. Anybody with the gene has a 50/50 chance of passing the gene onto their children, it’s like tossing a coin.
My mum gave me the gene, and her mum gave her the gene meaning I’ve watched them both heartbreakingly deteriorate as the disease takes over their body, with the knowledge I carry the gene too. I was 36 when I decided to be tested for the gene, and I cared for my mum, who is now in full time care. My mum is my main inspiration for this challenge, as I watched her struggle over the years, but she still to this day has not been negative about her condition once (not once) and her life still revolves around her family (but mostly her granddaughters – they’re her favourites).
The disease has been branded ‘the most devastating disease’ known to
human kind by doctors worldwide, with combined symptoms of Parkinson’s, MND, ALS, Alzheimer’s, Schizophrenia, Depression and Anxiety. It completely takes over the human body and slowly shuts down things that you use for everyday functioning. It effects 3 different aspects of the body; movement, cognition and behaviours.
I am now in the middle stages of the disease, I left work 5 years ago to
care for my mum as my health also deteriorated. I struggle daily with depression, anxiety, muscle ticks and jerks and I experience indescribable pain in my muscles, joints and nerves. I struggle to walk without aid, I can barely eat as I am losing the ability to swallow, I tire easily but I struggle tremendously with my sleep. I often forget things that you would expect somebody to remember, I am losing the ability to organise my life and don’t really have a routine anymore, it’s based on whether I’m having a good day or bad day with pain etc. Some days even if my pain is manageable, I don't want to leave the house, for fear of people not understanding my condition. The disease impacts my moods, sometimes turning me into somebody completely different, which can be distressing for those who love me, as well as myself.
Living with the disease can be extremely lonely sometimes, especially
while knowing my mum is suffering too. My mum (of which the pictures attached aren't unfortunately recent) has lost all ability to speak, she is fed through a tube and hasn’t been out of her bed for 2 years. She suffers from horrendous anxiety which is only calmed by a cuddle from us and a chat even though we don’t know what she’s trying to say, though Charlie often makes her laugh pulling stupid faces and dancing like a loon. I know I’m not going to get better but we pray everyday for a cure, to free families like us from years of pain, but we’re strong.
My family provide unprecedented care 24 hours a day, even when I’m
irritable or down. Some days I can’t move from my bed but I know for a fact they’re there for me in every sense of the word. My husband works full time, but still manages to give me emotional and physical support day in and out. My girls live with the dark cloud of being gene carriers but their positive outlook on life keeps me going, every, single, day. I know in the near future my condition will worsen, but with the help of the HDA and my family, I don’t live in fear, just as I pray my girls don’t either.
I know it seems absurd to walk 135 miles when I struggle to walk without aid, but accomplishing this challenge will give me the confidence and strength to fight for my happiness everyday and with Paul, family and friend’s help along the way, I know I will achieve this goal. It’ll help my girls remember me for the strong, courageous woman I am watching them become as well as raise awareness and funds for a charity who have helped our family tremendously.
Like I said the disease can be lonely for the gene carrier and their
family. With nobody who understands what it’s like to go through the disease or understand how hard it can be caring for somebody with it while trying to live a normal life. The HDA provide a solution, with specialist nurses who visit the house and provide advice on care and other things we have to consider as a family living with the disease. Sometimes its just nice to speak to other people who understand our struggle. The charity does remarkable work for us and families like us all
over the UK.
I’ll be starting the walk on Saturday 20th July and finishing a week later, all being well.
Thank you so much for reading my story. No donation is too small, and if you cannot donate, I hope reading this has educated you on the disease's effects but also our willingness as a family unit to fight it everyday.'
'Before you read my story, I’d like people understand my love for life
and my sheer gratefulness for being able to share this with you. I’m a little apprehensive to tell my story, but I know this will help lots of other families as well as raise awareness for HD in the bid to find a cure.
My name is Elaine as some of you may know, I’m the mother of a crazy,
beautiful family. I have 2 beautiful girls, a lovely step son, 3 dogs, 3 cats and an incredibly caring husband (it’s a mad house, I know!)
Huntington’s Disease is a rare neurodegenerative disease, which effects around 8,000 people in UK, me being one of them. HD is an incurable and fatal hereditary disease which occurs due to mutation in chromosome 4 which slowly kills neurons in multiple areas of the brain. Anybody with the gene has a 50/50 chance of passing the gene onto their children, it’s like tossing a coin.
My mum gave me the gene, and her mum gave her the gene meaning I’ve watched them both heartbreakingly deteriorate as the disease takes over their body, with the knowledge I carry the gene too. I was 36 when I decided to be tested for the gene, and I cared for my mum, who is now in full time care. My mum is my main inspiration for this challenge, as I watched her struggle over the years, but she still to this day has not been negative about her condition once (not once) and her life still revolves around her family (but mostly her granddaughters – they’re her favourites).
The disease has been branded ‘the most devastating disease’ known to
human kind by doctors worldwide, with combined symptoms of Parkinson’s, MND, ALS, Alzheimer’s, Schizophrenia, Depression and Anxiety. It completely takes over the human body and slowly shuts down things that you use for everyday functioning. It effects 3 different aspects of the body; movement, cognition and behaviours.
I am now in the middle stages of the disease, I left work 5 years ago to
care for my mum as my health also deteriorated. I struggle daily with depression, anxiety, muscle ticks and jerks and I experience indescribable pain in my muscles, joints and nerves. I struggle to walk without aid, I can barely eat as I am losing the ability to swallow, I tire easily but I struggle tremendously with my sleep. I often forget things that you would expect somebody to remember, I am losing the ability to organise my life and don’t really have a routine anymore, it’s based on whether I’m having a good day or bad day with pain etc. Some days even if my pain is manageable, I don't want to leave the house, for fear of people not understanding my condition. The disease impacts my moods, sometimes turning me into somebody completely different, which can be distressing for those who love me, as well as myself.
Living with the disease can be extremely lonely sometimes, especially
while knowing my mum is suffering too. My mum (of which the pictures attached aren't unfortunately recent) has lost all ability to speak, she is fed through a tube and hasn’t been out of her bed for 2 years. She suffers from horrendous anxiety which is only calmed by a cuddle from us and a chat even though we don’t know what she’s trying to say, though Charlie often makes her laugh pulling stupid faces and dancing like a loon. I know I’m not going to get better but we pray everyday for a cure, to free families like us from years of pain, but we’re strong.
My family provide unprecedented care 24 hours a day, even when I’m
irritable or down. Some days I can’t move from my bed but I know for a fact they’re there for me in every sense of the word. My husband works full time, but still manages to give me emotional and physical support day in and out. My girls live with the dark cloud of being gene carriers but their positive outlook on life keeps me going, every, single, day. I know in the near future my condition will worsen, but with the help of the HDA and my family, I don’t live in fear, just as I pray my girls don’t either.
I know it seems absurd to walk 135 miles when I struggle to walk without aid, but accomplishing this challenge will give me the confidence and strength to fight for my happiness everyday and with Paul, family and friend’s help along the way, I know I will achieve this goal. It’ll help my girls remember me for the strong, courageous woman I am watching them become as well as raise awareness and funds for a charity who have helped our family tremendously.
Like I said the disease can be lonely for the gene carrier and their
family. With nobody who understands what it’s like to go through the disease or understand how hard it can be caring for somebody with it while trying to live a normal life. The HDA provide a solution, with specialist nurses who visit the house and provide advice on care and other things we have to consider as a family living with the disease. Sometimes its just nice to speak to other people who understand our struggle. The charity does remarkable work for us and families like us all
over the UK.
I’ll be starting the walk on Saturday 20th July and finishing a week later, all being well.
Thank you so much for reading my story. No donation is too small, and if you cannot donate, I hope reading this has educated you on the disease's effects but also our willingness as a family unit to fight it everyday.'