Welcome to Paris’s battle with motor neurone disease #MNDwon’tBeatMe. I have started this page on Paris’s behalf as her condition no longer allows for her to type for herself. All of the words below have been dictated by Paris. Thank you for visiting and taking the time to learn about her story.
From Paris:
My Name is Paris Lever and here is my story about my battle with MND (Motor Neuron Disease). My life was going as planned; I was a healthy 26 year old with a husband to be and two beautiful daughters of 3 and 7. I had just started my dream job when my world came crashing down as I was diagnosed with a terminal illness with no known cure. These last two years from initial symptoms to diagnosis have been a roller coaster of emotions. But I will not let MND ruin my life, I am determined to fight this head on and make the most of the time that I have left with my friends and family.
After spending time working with Motor Neuron Disease Association (MNDA), to raise awareness for this amazing charity and to raise money for their cause, I have finally decided that it is time to focus on myself and my family before my symptoms progress further.
My wish is to raise money to travel the world and make as many special memories with my girl’s and my partner as possible before I am no longer able to. As we travel along this journey I hope to be able to share it all with you on this page. These memories will be vital for my daughters to remember me when I am no longer with them.
Motor neuron disease is very rare. It can affect any adult at any age but most people diagnosed with the disease are over the age of 40, with the highest incidence occurring between the ages of 50 and 70. A third of people die within a year and more than half within two years. It affects 2 in every 100,000 people. Around 5,000 people have it at one time in the U.K and a GP will statistically only come across one patient diagnosed with MND in their whole career!
It is more common in men than women below the age of 65, so most women that are diagnosed with MND have been through the menopause. This meant for me to be diagnosed, at my age is exceptionally rare, the odds are probably 1 in millions. My neurologist has said the fittest people get this disease, people that have done a lot of sport. So the irony is after many year of representing Great Britain as a gymnast, thinking this healthy lifestyle will be good for me in the future, it’s actually probably contributed towards this diagnosis, as well as my genetic makeup. I was told that I am the fittest and second youngest person she has ever diagnosed. This also means that although it is my dream to travel the world with my family this may not be possible in 6 months time. If this is the case then your donations will go towards my medical care, to keep me independent for as long as possible, instead of the traveling. Such as: a stair lift, hoist, a wet room, house renovations to make it disability friendly, voice banking communication aids, specialised wheelchair, disability enabled car and a trust fund for my children’s’ future. The trust fund is close to my heart and dear to me as my husband will now become a single parent coping alone with raising the girls and coping with my loss. What once was a two man team will become one and the financial side of things will be a struggle.
Thank you for taking the time to read my cause. If you want to read my full story from diagnosis to now please continue reading below.
How your donations could help me and my family:
£3,500 - for travel insurance due to my health conditions (each trip)
+
£9,000 – Mexico for our honeymoon with the children
+
£11,000 – Trip to Disneyland Florida for my family
+
£8,000 – Traveling down the East Coast of Australia (Gold coast, Sydney and Melbourne)
+
£20,000 – Trust fund for my two daughters
My story:
I have always loved sport and trained as a gymnast in Sports Acrobatics from a young age. After years of dedication and winning gold medals at numerous competitions and the British championships I was finally picked to join the great Britain team and represent my country at the age of 15. I competed at the Europeans and World championships in which I won a silver medal in both. After years of representing my country I decided to retire due to injuries and wanting to focus on my education. From then on I have been a completely healthy adult and have started a family after being blessed with two beautiful girls. I am also due to get married later this year to the father of my children and the love of my life.
These last two years have literally been the worst years for me and my amazing family. My symptoms started at the end of 2015 at work. I was randomly dropping things and losing grip in one hand. Then the constant twitching in my arm started and eventually my speech felt slurred and delayed. After an A&E trip for a suspected stroke, all of my brain scans came back clear which was a huge relief. However, overtime it gradually got worse and eventually resulted in me losing all my muscle in my hand, there was literally just a hole where the muscle used to be. Despite all of this, I was not worried; I just thought it was a trapped or damaged nerve. As a retired gymnast I expected to get aches and pains with age!
After a referral to a neurologist I went through test after test and all of them came back with the same result…negative. It was only after an EMG that finally something was found. My results showed degeneration in my hand and arm. This meant that my nerves were not working properly and were not sending signals as they should be. I was then referred on to the Centre of Excellence at Charring Cross Hospital for yet more tests, but unfortunately they all had the same results as before…negative. This was now limiting the possibilities down to a few rare neurological diseases, none of which I wanted to be diagnosed with.
Right so here we go….My diagnosis ….MND (Motor Neuron Disease) also known as ALS, with a 2-5 year life expectancy. This is a terminal illness with no cure. I couldn’t believe it, just hearing that my whole world crashed. All sorts of things ran through my head, what is going to happen to my girls when I am gone? How is my husband to be going to cope when I am gone, whilst also staying strong for the girls? How much time do I have left?
I’m not going to lie, I’m heartbroken and scared, but I’m not going to let this beat me. I have numerous proud moments in my life, one of them being in 2006 at the age of 15, standing on that podium at the world championships representing my country and gaining a silver medal. One thing all those years of training taught me was to work hard for what you want and to never give up, and I’m not going to. The proudest moment in my life was becoming a mummy to my beautiful girls. I’m so proud of what my fiancé and I have created. I feel heartbroken for them knowing in the near future I may not be here to see them grow into beautiful young women. I’m scared of how they are going to cope without a mummy, because every little girl needs their mum. I’m scared of missing their school plays, their first day of senior school, prom, stroppy teenager arguments, engagements and grandchildren. I’m also scared of how my fiancé will cope as a single father, but I know if anyone was to do the job it would be him because he will always be there, do his best and never let them down.
The only thing I can do now is make the most of it by making scrapbooks, videos, buying birthday cards and presents for the girls to open for the birthdays I’m not going to be here to see. I want to make as many amazing memories as I can with my family whilst I am still able to. But I am determined to fight this for as long as possible. I’d also like to thank all the amazing staff at West Middlesex Hospital, Charing Cross Hospital, The Royal Hallamshire hospital and the National Hospital for Neurology and Neurosurgery for all of their support and hard work. The NHS does amazing work!
I’m going to finish here with some words of advice to all of you that have read this far! You never know what is round the corner; you’re not guaranteed to live a long and healthy life so make the most of everyday and be grateful that you’re still living. Do not take life for granted, live it to the fullest. Do not fall out with friends and family over silly things because life is too short, before you know it, it could be too late. Materialistic things do not matter in life; the most important things are your health, family, true friends and love. If any of you have children please make sure you hug and kiss them every day and tell them you love them as much as possible! Be grateful for every birthday you make, everyone moans about ageing but I would do anything to be given that privilege and see my girls grow up. I never thought I would be in this situation because I took life for granted. I thought my fiancé, our girls and I would grow old but the reality is very different. I feel like my whole life plan has just gone but now I just need to focus on the present. So don’t plan for the future, plan for today and make the most of it. The way I see it is I am not dying; I am living and appreciating every day. Thank you for all of your support so far.
From Paris:
My Name is Paris Lever and here is my story about my battle with MND (Motor Neuron Disease). My life was going as planned; I was a healthy 26 year old with a husband to be and two beautiful daughters of 3 and 7. I had just started my dream job when my world came crashing down as I was diagnosed with a terminal illness with no known cure. These last two years from initial symptoms to diagnosis have been a roller coaster of emotions. But I will not let MND ruin my life, I am determined to fight this head on and make the most of the time that I have left with my friends and family.
After spending time working with Motor Neuron Disease Association (MNDA), to raise awareness for this amazing charity and to raise money for their cause, I have finally decided that it is time to focus on myself and my family before my symptoms progress further.
My wish is to raise money to travel the world and make as many special memories with my girl’s and my partner as possible before I am no longer able to. As we travel along this journey I hope to be able to share it all with you on this page. These memories will be vital for my daughters to remember me when I am no longer with them.
Motor neuron disease is very rare. It can affect any adult at any age but most people diagnosed with the disease are over the age of 40, with the highest incidence occurring between the ages of 50 and 70. A third of people die within a year and more than half within two years. It affects 2 in every 100,000 people. Around 5,000 people have it at one time in the U.K and a GP will statistically only come across one patient diagnosed with MND in their whole career!
It is more common in men than women below the age of 65, so most women that are diagnosed with MND have been through the menopause. This meant for me to be diagnosed, at my age is exceptionally rare, the odds are probably 1 in millions. My neurologist has said the fittest people get this disease, people that have done a lot of sport. So the irony is after many year of representing Great Britain as a gymnast, thinking this healthy lifestyle will be good for me in the future, it’s actually probably contributed towards this diagnosis, as well as my genetic makeup. I was told that I am the fittest and second youngest person she has ever diagnosed. This also means that although it is my dream to travel the world with my family this may not be possible in 6 months time. If this is the case then your donations will go towards my medical care, to keep me independent for as long as possible, instead of the traveling. Such as: a stair lift, hoist, a wet room, house renovations to make it disability friendly, voice banking communication aids, specialised wheelchair, disability enabled car and a trust fund for my children’s’ future. The trust fund is close to my heart and dear to me as my husband will now become a single parent coping alone with raising the girls and coping with my loss. What once was a two man team will become one and the financial side of things will be a struggle.
Thank you for taking the time to read my cause. If you want to read my full story from diagnosis to now please continue reading below.
How your donations could help me and my family:
£3,500 - for travel insurance due to my health conditions (each trip)
+
£9,000 – Mexico for our honeymoon with the children
+
£11,000 – Trip to Disneyland Florida for my family
+
£8,000 – Traveling down the East Coast of Australia (Gold coast, Sydney and Melbourne)
+
£20,000 – Trust fund for my two daughters
My story:
I have always loved sport and trained as a gymnast in Sports Acrobatics from a young age. After years of dedication and winning gold medals at numerous competitions and the British championships I was finally picked to join the great Britain team and represent my country at the age of 15. I competed at the Europeans and World championships in which I won a silver medal in both. After years of representing my country I decided to retire due to injuries and wanting to focus on my education. From then on I have been a completely healthy adult and have started a family after being blessed with two beautiful girls. I am also due to get married later this year to the father of my children and the love of my life.
These last two years have literally been the worst years for me and my amazing family. My symptoms started at the end of 2015 at work. I was randomly dropping things and losing grip in one hand. Then the constant twitching in my arm started and eventually my speech felt slurred and delayed. After an A&E trip for a suspected stroke, all of my brain scans came back clear which was a huge relief. However, overtime it gradually got worse and eventually resulted in me losing all my muscle in my hand, there was literally just a hole where the muscle used to be. Despite all of this, I was not worried; I just thought it was a trapped or damaged nerve. As a retired gymnast I expected to get aches and pains with age!
After a referral to a neurologist I went through test after test and all of them came back with the same result…negative. It was only after an EMG that finally something was found. My results showed degeneration in my hand and arm. This meant that my nerves were not working properly and were not sending signals as they should be. I was then referred on to the Centre of Excellence at Charring Cross Hospital for yet more tests, but unfortunately they all had the same results as before…negative. This was now limiting the possibilities down to a few rare neurological diseases, none of which I wanted to be diagnosed with.
Right so here we go….My diagnosis ….MND (Motor Neuron Disease) also known as ALS, with a 2-5 year life expectancy. This is a terminal illness with no cure. I couldn’t believe it, just hearing that my whole world crashed. All sorts of things ran through my head, what is going to happen to my girls when I am gone? How is my husband to be going to cope when I am gone, whilst also staying strong for the girls? How much time do I have left?
I’m not going to lie, I’m heartbroken and scared, but I’m not going to let this beat me. I have numerous proud moments in my life, one of them being in 2006 at the age of 15, standing on that podium at the world championships representing my country and gaining a silver medal. One thing all those years of training taught me was to work hard for what you want and to never give up, and I’m not going to. The proudest moment in my life was becoming a mummy to my beautiful girls. I’m so proud of what my fiancé and I have created. I feel heartbroken for them knowing in the near future I may not be here to see them grow into beautiful young women. I’m scared of how they are going to cope without a mummy, because every little girl needs their mum. I’m scared of missing their school plays, their first day of senior school, prom, stroppy teenager arguments, engagements and grandchildren. I’m also scared of how my fiancé will cope as a single father, but I know if anyone was to do the job it would be him because he will always be there, do his best and never let them down.
The only thing I can do now is make the most of it by making scrapbooks, videos, buying birthday cards and presents for the girls to open for the birthdays I’m not going to be here to see. I want to make as many amazing memories as I can with my family whilst I am still able to. But I am determined to fight this for as long as possible. I’d also like to thank all the amazing staff at West Middlesex Hospital, Charing Cross Hospital, The Royal Hallamshire hospital and the National Hospital for Neurology and Neurosurgery for all of their support and hard work. The NHS does amazing work!
I’m going to finish here with some words of advice to all of you that have read this far! You never know what is round the corner; you’re not guaranteed to live a long and healthy life so make the most of everyday and be grateful that you’re still living. Do not take life for granted, live it to the fullest. Do not fall out with friends and family over silly things because life is too short, before you know it, it could be too late. Materialistic things do not matter in life; the most important things are your health, family, true friends and love. If any of you have children please make sure you hug and kiss them every day and tell them you love them as much as possible! Be grateful for every birthday you make, everyone moans about ageing but I would do anything to be given that privilege and see my girls grow up. I never thought I would be in this situation because I took life for granted. I thought my fiancé, our girls and I would grow old but the reality is very different. I feel like my whole life plan has just gone but now I just need to focus on the present. So don’t plan for the future, plan for today and make the most of it. The way I see it is I am not dying; I am living and appreciating every day. Thank you for all of your support so far.