Jordan’s Bucket List Fund
Donation protected
March 14th 2016. I thought my life could not get any worse, the day my mom passed away at 52 from Fronto-temporal dementia (also known as Pick’s Disease).
My mom’s life revolved around me, my two brothers and my dad. She was the most vivacious, happy and selfless person you could wish to meet. The first time I remember crying about the changes I saw in my mom I was 13. She was cold and distant, something she had never been. She started forgetting things she would do every day. She became almost robotic and would just ask me questions rather than engage in a conversation. I was distraught and knew something was not right but with no diagnosis the whole family was left nothing short of confused and distressed. Finally in 2010, when I was 17, my mom was diagnosed with frontotemperal lobe dementia, my dad came home and broke the news and the next 6 years were simply a nightmare. My mom deteriorated every week, to the point where her last 3 years she could not walk or talk, she was tube fed directly into her stomach via a machine, the only thing she could do for herself was breathe. Until one day she wasn’t able to do that for herself either.
We were bereft. We still are, there’s not a day goes by where we don’t think of mom and wish she was still here with us. But as each day passed the fear in me grew. I knew I had 50% chance of inheriting this disease and so did my brothers. A year later my mom’s sister passed away from the same evil disease. The following year my mom’s cousin passed too. Four of my mom’s other cousins are living with the disease. I felt like all my loved ones were being taken from me one by one like there was a black cloud hanging over us all. I felt like I was living a nightmare. I couldn’t help but think me and my brothers were next.
I was scared every single day. The disease is hereditary, it’s aggressive and it’s rare. I’ve been told you have more chance of winning the Euro Millions than getting this disease.
In May this year I got the all clear, it was the best day of my life. The relief I felt was indescribable, I could blissfully assume I was going to live til 80 like most people my age.
My brother decided to follow suit after long debate on whether to go for it or not. September 12th 2018 - the worst day of my life and the worst day of my brothers. I sat in a cafe in the Birmingham Women’s Hospital feel sick to my stomach, every second that passed felt like an hour. My brother walked through the double doors with his girlfriend and I could see immediately on their faces it was not good news. “I’ve got the gene”. I did not understand. It didn’t register. I asked him what he meant and he repeated himself. As you can imagine I sobbed my heart out. I have always loved my brother unconditionally but one thing this whole situation has shown me is that I admire him more than anyone on this planet. He is the strongest person I know. When he got home and broke the news to our loved ones, HE was comforting them. He told us not to feel sad or guilty. And he told us he will live life to its fullest because he doesn’t know how long he has.
Jordan having this gene means that at any time he could develop symptoms of frontotemperal lobe dementia or Parkinson’s or both. He won’t get it when he’s old and grey but when he’s young and fit. It will strip him first of his personality. He won’t have likes and dislikes, he won’t be able to hold a conversation. Eventually he won’t be able to feed himself or walk. My heart is broken.
After watching my mom go through this first hand, we know the full implications of this evil disease. Nothing will ever fully prepare Jordan for getting this disease but I want him to enjoy every minute. I want him to take full advantage of everything life has to offer. I want him to live a fulfilled life even if it is shorter than it should be. I want him to tick off his bucket list whilst he can and make memories that we can all treasure. So this Go Fund Me page is for exactly that. Whatever he wishes to do with his time before this takes over. I appreciate everyone has their shit in life but if you could spare anything at all I promise you it will be so appreciated.
Disclaimer: This content is exclusively managed by Caters News. To license or use in a commercial player please contact [email redacted] or call +44 [phone redacted] / [phone redacted]
My mom’s life revolved around me, my two brothers and my dad. She was the most vivacious, happy and selfless person you could wish to meet. The first time I remember crying about the changes I saw in my mom I was 13. She was cold and distant, something she had never been. She started forgetting things she would do every day. She became almost robotic and would just ask me questions rather than engage in a conversation. I was distraught and knew something was not right but with no diagnosis the whole family was left nothing short of confused and distressed. Finally in 2010, when I was 17, my mom was diagnosed with frontotemperal lobe dementia, my dad came home and broke the news and the next 6 years were simply a nightmare. My mom deteriorated every week, to the point where her last 3 years she could not walk or talk, she was tube fed directly into her stomach via a machine, the only thing she could do for herself was breathe. Until one day she wasn’t able to do that for herself either.
We were bereft. We still are, there’s not a day goes by where we don’t think of mom and wish she was still here with us. But as each day passed the fear in me grew. I knew I had 50% chance of inheriting this disease and so did my brothers. A year later my mom’s sister passed away from the same evil disease. The following year my mom’s cousin passed too. Four of my mom’s other cousins are living with the disease. I felt like all my loved ones were being taken from me one by one like there was a black cloud hanging over us all. I felt like I was living a nightmare. I couldn’t help but think me and my brothers were next.
I was scared every single day. The disease is hereditary, it’s aggressive and it’s rare. I’ve been told you have more chance of winning the Euro Millions than getting this disease.
In May this year I got the all clear, it was the best day of my life. The relief I felt was indescribable, I could blissfully assume I was going to live til 80 like most people my age.
My brother decided to follow suit after long debate on whether to go for it or not. September 12th 2018 - the worst day of my life and the worst day of my brothers. I sat in a cafe in the Birmingham Women’s Hospital feel sick to my stomach, every second that passed felt like an hour. My brother walked through the double doors with his girlfriend and I could see immediately on their faces it was not good news. “I’ve got the gene”. I did not understand. It didn’t register. I asked him what he meant and he repeated himself. As you can imagine I sobbed my heart out. I have always loved my brother unconditionally but one thing this whole situation has shown me is that I admire him more than anyone on this planet. He is the strongest person I know. When he got home and broke the news to our loved ones, HE was comforting them. He told us not to feel sad or guilty. And he told us he will live life to its fullest because he doesn’t know how long he has.
Jordan having this gene means that at any time he could develop symptoms of frontotemperal lobe dementia or Parkinson’s or both. He won’t get it when he’s old and grey but when he’s young and fit. It will strip him first of his personality. He won’t have likes and dislikes, he won’t be able to hold a conversation. Eventually he won’t be able to feed himself or walk. My heart is broken.
After watching my mom go through this first hand, we know the full implications of this evil disease. Nothing will ever fully prepare Jordan for getting this disease but I want him to enjoy every minute. I want him to take full advantage of everything life has to offer. I want him to live a fulfilled life even if it is shorter than it should be. I want him to tick off his bucket list whilst he can and make memories that we can all treasure. So this Go Fund Me page is for exactly that. Whatever he wishes to do with his time before this takes over. I appreciate everyone has their shit in life but if you could spare anything at all I promise you it will be so appreciated.
Disclaimer: This content is exclusively managed by Caters News. To license or use in a commercial player please contact [email redacted] or call +44 [phone redacted] / [phone redacted]
Organizer
Ked La
Organizer