When I was a young boy, I liked riding bikes. I'd go build dirt jumps with my friends. One day, while with my friends, I built a dirt jump by myself... I called it, "the big one." After building it, I had a strange feeling before jumping it, but still decided to jump it anyway. While landing, my handlebars turned into my stomach an created a hematoma. Later the next day, while at school, I started having severe pains in my stomach, so while on the way to the nurses office I collapsed in the hallway. I remember waking up to a paramedic pushing on my stomach. It hurt so bad. 😖At the hospital they did an X-ray an rushed me straight to surgery... Afterwards, my doctor explained to my mother that a hematoma caused my appendix to burst. The doctor said to her, "there was a carcinoid tumor behind your sons appendix, but don't worry, it was easily removed..." On the way home my Mom was wondering what a carcinoid tumor was.🤔 Fortunately my dad used to be a nurse so she told him. He was shocked!.... He said, "that's a cancerous tumor honey! Our son is luck it was benign or it could of spread." That's when I realized God works in mysterious ways.💯 Unfortunately, God giveth, an God taketh away. About 6yrs later, I started having grand-mal seizures. While at the hospital, they did an MRI and found a cyst the size of a quarter in the fourth ventricle of my brain near the cerebellum, so they did another surgery, but before they took me in to start the operation, they let my children into the ICU to see me... In the meantime, my Mother and Father didn't tell me that they were only letting them in because it was a very risky operation, and it might be their last time to see their father alive.😔 After signing a piece of paper saying if I died while being operated on, the doctor/staff or hospital can't be held accountable. Yay, it was a success! They said my surgery was riskier than a triple bypass heart surgery though.😕 I still had much more to go through... After 5 months, and back to settin' tile again, I had another grand-mal seizure, this time they said it was scar tissue that was causing them. Things went down hill from there... I lost my driver's license, and now I have to take anti- seizure meds (14 pills a day) for the rest of my life. Me and my girlfriend where in our early 20's at the time, and she told me she couldn't deal with it, so she went and started another family. I was crushed, especially when I realized it was with one of my so-called "friends". After another 6 yrs, I fell in love with another woman, and we started another family, and we had a beautiful daughter together. I wanted our family to be strong for the rest of our lives... but God had other plans. She never wanted to drive or work and I told her that if I could, I would, but I just couldn't anymore because of my disability, so she had to, but she never did. After my daughter turned seven, she left and decided she wanted to work, drive and take care of our daughter.... just not with me.... 5yrs later she married another Man. I was unbelievably crushed this time.. 💔😭 I just wanted to take care of my family, but I lost both of them. I just wasn't put on this earth for it I guess. I decided to move back home with my Mother and Father.🤷♂️ 3yrs later my Father passed away.😔💔 I was about to give up, I didn't want to live anymore. I stopped talking to everyone, other than my Mother after she became my rep-payee. For 3 years, every birthday, I prayed to God for a miracle..... Finally, he answered my prayers.💯 One day my phone rang, but I never picked up my phone to talk to anyone anymore, but I decided to look at who was calling me, I saw it was a video call this time, and this time I saw one of the most beautiful faces I haven't seen for a loooong time..... it was my daughters.😊 That's when I truly believed God does exist. I'm almost 40 now, and I'm pretty sure I will die from SUDEP eventually, because I have the worst full tonic clonic seizures, and my heart ain't getting any younger. I've started having more seizures while sleeping but that's ok, it will all work out in the end. It's the life God has given me, and I except it. I just want my family to have closure.🙂 This is my testimony, thanks for reading it everyone. God bless.
This video gave me closure to how my 20 year old brother who "died in his sleep" on 20 January 2023. I really wish knew this a lot earlier given that he would experience nocturnal seizures 😔
Thank you for sharing this video. My 17 year old son died on 09.07.20 from SUDEP. Something I had never heard of infuriated me. I also have epilepsy, unrelated to my son's. Mine is from a head injury in a car accident that occurred in 1993. We never learned the "why" or "how" his developed. The main thing I learned from your video is that there are 2 different sets of numbers for controlled vs uncontrolled. That blew my mind. I have never heard that. My son's were definitely uncontrolled. He only began having them 4 years before his death. In fact, crazy thing is, he was diagnosed just after Labor Day weekend. During the weekend was his first seizure. It was 4 years later, on Labor Day weekend, that he would die. I belong to a SUDEP support group through The Epilepsy Foundation. I'm going to ask the group if their child had their seizures controlled or uncontrolled. It's just another tid bit of information that needs to be shared. I have been considering contacting the coroner to see if the cause on the death certificate can be changed from "non traumatic seizure disorder". It also lists the matter as "pending investigation". Nice huh? I just noticed that little "x" next to pending. I will be writing the coroner. Anyways, thank you for posting video's and I'll look for more upcoming video once I register to the group. I'm sorry for your loss. Losing a child is a horrible thing to live through.
You have our deepest sympathies. We will continue to fund research on SUDEP to prevent tragedies like this in the future. You might be interested in our Seizing Life episode with a guest from PAME (Partners Against Mortality in Epilepsy). This episode discusses SUDEP and even touches on the complexities of what the cause of death is listed as on the death certificates of loved ones who have died from SUDEP. You can find the episode here: www.cureepilepsy.org/seizing-life/addressing-and-reducing-epilepsy-related-deaths/
I live in New zealand My 22 year old daughter passed away on the 7th may 2022 I found her face down in her pillow she suffocated for at least 5 years she has being collapsing and blacking out and have seizure activity the Dr's and psychologists kept saying there's nothing wrong with her a couple of days ago I got the coroners report and they said her cause of death was cardiac event and sudep and froth in the airways I never heard of sudep till now I feel like we were failed big time
Epilepsy is not an easy neurological disorder to live with. We appreciate you sharing your experience with us. Know that we are unrelenting in our mission to find a cure.
I just lost my 19 years old daughter on March 2 2021 and was never told by the Dr. about SUDEP. I wish I would’ve been told so that I would’ve expected and know how to deal with my daughter death. I even told the Dr. to advise his patience of SUDEP so that they will be aware and not surprised if it will happen.
I don’t know if you’re interested in a grief group for SUDEP? The epilepsy foundation international has a SUDEP grief group. It’s really been great. It’s a once a month zoom meeting. There is nothing like talking with other parents that their child has died from SUDEP too. I lost my 17 year old son 09.07.20. No one can understand the depth of grief in losing a child. I’m so sorry for your loss. 💜
I think about this a lot. Even though my neurologist says it's unlikely, it's still described as sudden and unexpected, so I want to do as much as I can with my life in case the worst should happen. In a way, it actually motivates me to do everything I've always wanted to do without worrying about potential barriers, like what others might think or judge me or whether I should wait for the time that I'm truly ready.
Thank you for this, it really touched me. I have drug resistant epilepsy and live life to the full and an advocate for positive living whilst having Epilepsy. Thank you.
My 23 year old son passed in his sleep due to SUDEP just four weeks ago. He had uncontrollable nocturnal seizures since he was 8. Nobody ever spoke to us about SUDEP.
Does bleeding happen to anybody, my fther was alone at home, he had his last nocturnal seizures 17 yrs back and 21days back we found him dead in his home as my mother went to her brother’s place, we didnt had the guts for autopsy. So we really dont know what evil thing took him away ! We found blood on his sheets (not too much)
Thank you so much for this amazing company, my son just received his embrace 2 watch from you all last month and it has given me some more peace in his sleep .
I’m very worried. My kid has had two within months. Not everyday. But last one they were asleep. Stopped breathing for a bit. I now want her to sleep with me. She’s 16 and wants to be independent. I feel a bit lost
My sons first seizure was 2019 I just asked our neurologist 6 months ago about sudep and gave him the danny did folder , he said he does NOT talk to his patients about it and he is head of neurology . My mom heart is so stuck with what to do .
I would say it's time to get a new Neuro. A Neuro who can't talk about every possible outcome for your son..is cheating him of excellent care. A disease is managed best when you know every possibility.
I never knew this and am over 70 and had seizures at birth and then only at night and now live alone thank you, I do wear the life alert always.Is it only in young?
SUDEP can occur at any age. If you want to learn more about SUDEP, you can visit our website here: www.cureepilepsy.org/signature_programs-sudep-sudden-unexpected-death-in-epilepsy-overview/
When I was a young boy, I liked riding bikes. I'd go build dirt jumps with my friends.
One day, while with my friends, I built a dirt jump by myself... I called it, "the big one." After building it, I had a strange feeling before jumping it, but still decided to jump it anyway.
While landing, my handlebars turned into my stomach an created a hematoma. Later the next day, while at school, I started having severe pains in my stomach, so while on the way to the nurses office I collapsed in the hallway.
I remember waking up to a paramedic pushing on my stomach. It hurt so bad. 😖At the hospital they did an X-ray an rushed me straight to surgery... Afterwards, my doctor explained to my mother that a hematoma caused my appendix to burst.
The doctor said to her, "there was a carcinoid tumor behind your sons appendix, but don't worry, it was easily removed..."
On the way home my Mom was wondering what a carcinoid tumor was.🤔 Fortunately my dad used to be a nurse so she told him. He was shocked!.... He said, "that's a cancerous tumor honey! Our son is luck it was benign or it could of spread." That's when I realized God works in mysterious ways.💯 Unfortunately, God giveth, an God taketh away.
About 6yrs later, I started having grand-mal seizures. While at the hospital, they did an MRI and found a cyst the size of a quarter in the fourth ventricle of my brain near the cerebellum, so they did another surgery, but before they took me in to start the operation, they let my children into the ICU to see me... In the meantime, my Mother and Father didn't tell me that they were only letting them in because it was a very risky operation, and it might be their last time to see their father alive.😔
After signing a piece of paper saying if I died while being operated on, the doctor/staff or hospital can't be held accountable.
Yay, it was a success! They said my surgery was riskier than a triple bypass heart surgery though.😕 I still had much more to go through...
After 5 months, and back to settin' tile again, I had another grand-mal seizure, this time they said it was scar tissue that was causing them. Things went down hill from there... I lost my driver's license, and now I have to take anti- seizure meds (14 pills a day) for the rest of my life.
Me and my girlfriend where in our early 20's at the time, and she told me she couldn't deal with it, so she went and started another family. I was crushed, especially when I realized it was with one of my so-called "friends".
After another 6 yrs, I fell in love with another woman, and we started another family, and we had a beautiful daughter together. I wanted our family to be strong for the rest of our lives... but God had other plans.
She never wanted to drive or work and I told her that if I could, I would, but I just couldn't anymore because of my disability, so she had to, but she never did.
After my daughter turned seven, she left and decided she wanted to work, drive and take care of our daughter....
just not with me....
5yrs later she married another Man. I was unbelievably crushed this time.. 💔😭 I just wanted to take care of my family, but I lost both of them. I just wasn't put on this earth for it I guess. I decided to move back home with my Mother and Father.🤷♂️ 3yrs later my Father passed away.😔💔 I was about to give up, I didn't want to live anymore. I stopped talking to everyone, other than my Mother after she became my rep-payee.
For 3 years, every birthday, I prayed to God for a miracle..... Finally, he answered my prayers.💯
One day my phone rang, but I never picked up my phone to talk to anyone anymore, but I decided to look at who was calling me, I saw it was a video call this time, and this time I saw one of the most beautiful faces I haven't seen for a loooong time..... it was my daughters.😊
That's when I truly believed God does exist.
I'm almost 40 now, and I'm pretty sure I will die from SUDEP eventually, because I have the worst full tonic clonic seizures, and my heart ain't getting any younger.
I've started having more seizures while sleeping but that's ok, it will all work out in the end. It's the life God has given me, and I except it. I just want my family to have closure.🙂
This is my testimony, thanks for reading it everyone. God bless.
This video gave me closure to how my 20 year old brother who "died in his sleep" on 20 January 2023. I really wish knew this a lot earlier given that he would experience nocturnal seizures 😔
Thank you for sharing this video. My 17 year old son died on 09.07.20 from SUDEP. Something I had never heard of infuriated me. I also have epilepsy, unrelated to my son's. Mine is from a head injury in a car accident that occurred in 1993. We never learned the "why" or "how" his developed. The main thing I learned from your video is that there are 2 different sets of numbers for controlled vs uncontrolled. That blew my mind. I have never heard that. My son's were definitely uncontrolled. He only began having them 4 years before his death. In fact, crazy thing is, he was diagnosed just after Labor Day weekend. During the weekend was his first seizure. It was 4 years later, on Labor Day weekend, that he would die. I belong to a SUDEP support group through The Epilepsy Foundation. I'm going to ask the group if their child had their seizures controlled or uncontrolled. It's just another tid bit of information that needs to be shared. I have been considering contacting the coroner to see if the cause on the death certificate can be changed from "non traumatic seizure disorder". It also lists the matter as "pending investigation". Nice huh? I just noticed that little "x" next to pending. I will be writing the coroner. Anyways, thank you for posting video's and I'll look for more upcoming video once I register to the group. I'm sorry for your loss. Losing a child is a horrible thing to live through.
You have our deepest sympathies. We will continue to fund research on SUDEP to prevent tragedies like this in the future.
You might be interested in our Seizing Life episode with a guest from PAME (Partners Against Mortality in Epilepsy). This episode discusses SUDEP and even touches on the complexities of what the cause of death is listed as on the death certificates of loved ones who have died from SUDEP. You can find the episode here: www.cureepilepsy.org/seizing-life/addressing-and-reducing-epilepsy-related-deaths/
@@CUREepilepsy thank you. It’s been a journey that no parent wants.
I live in New zealand My 22 year old daughter passed away on the 7th may 2022 I found her face down in her pillow she suffocated for at least 5 years she has being collapsing and blacking out and have seizure activity the Dr's and psychologists kept saying there's nothing wrong with her a couple of days ago I got the coroners report and they said her cause of death was cardiac event and sudep and froth in the airways I never heard of sudep till now I feel like we were failed big time
A couple weeks ago I suffered a seizure. I have epilepsy. When I regain consciousness all I could think was how lucky I am to be alive.
Epilepsy is not an easy neurological disorder to live with. We appreciate you sharing your experience with us. Know that we are unrelenting in our mission to find a cure.
I just lost my 19 years old daughter on March 2 2021 and was never told by the Dr. about SUDEP. I wish I would’ve been told so that I would’ve expected and know how to deal with my daughter death. I even told the Dr. to advise his patience of SUDEP so that they will be aware and not surprised if it will happen.
I don’t know if you’re interested in a grief group for SUDEP? The epilepsy foundation international has a SUDEP grief group. It’s really been great. It’s a once a month zoom meeting. There is nothing like talking with other parents that their child has died from SUDEP too. I lost my 17 year old son 09.07.20. No one can understand the depth of grief in losing a child. I’m so sorry for your loss. 💜
Good content. Also terrifying. When my seizures started they were always in my sleep up until a few years back.
I think about this a lot. Even though my neurologist says it's unlikely, it's still described as sudden and unexpected, so I want to do as much as I can with my life in case the worst should happen. In a way, it actually motivates me to do everything I've always wanted to do without worrying about potential barriers, like what others might think or judge me or whether I should wait for the time that I'm truly ready.
Thank you for this, it really touched me. I have drug resistant epilepsy and live life to the full and an advocate for positive living whilst having Epilepsy. Thank you.
Wish I knew about SUDEP . Lost my 14 year old son 2 months ago .
My 23 year old son passed in his sleep due to SUDEP just four weeks ago. He had uncontrollable nocturnal seizures since he was 8. Nobody ever spoke to us about SUDEP.
Sorry to hear about your son same happened to me with my 19 years old daughter Nobody ever spoke to us about SUDEP.
I'm sorry for your loss. I had nocturnal seizures and never heard of SUDEP from any doctor as well. Just heard of it maybe 2 or 3 years ago.
I hope you are well Ricki... I too just lost my brother only 3 weeks ago to SUDEP. None of us had any clue about SUDEP.. it is truly devastating
Does bleeding happen to anybody, my fther was alone at home, he had his last nocturnal seizures 17 yrs back and 21days back we found him dead in his home as my mother went to her brother’s place, we didnt had the guts for autopsy. So we really dont know what evil thing took him away ! We found blood on his sheets (not too much)
Thank you so much for this amazing company, my son just received his embrace 2 watch from you all last month and it has given me some more peace in his sleep .
Thank you for this it really help I have seazures since I was 3 an 59 now
I’m very worried. My kid has had two within months. Not everyday. But last one they were asleep. Stopped breathing for a bit. I now want her to sleep with me. She’s 16 and wants to be independent. I feel a bit lost
My sons first seizure was 2019 I just asked our neurologist 6 months ago about sudep and gave him the danny did folder , he said he does NOT talk to his patients about it and he is head of neurology . My mom heart is so stuck with what to do .
I would say it's time to get a new Neuro. A Neuro who can't talk about every possible outcome for your son..is cheating him of excellent care. A disease is managed best when you know every possibility.
I don’t know if it’s possible to end Epilepsy but I had my Seizure Brain Tumor surgically removed.
I never knew this and am over 70 and had seizures at birth and then only at night and now live alone thank you, I do wear the life alert always.Is it only in young?
SUDEP can occur at any age. If you want to learn more about SUDEP, you can visit our website here: www.cureepilepsy.org/signature_programs-sudep-sudden-unexpected-death-in-epilepsy-overview/
What happens if you have both?
I have 2-3 generalized seizures a month even after every med and vns