A Day In The Life of Epilepsy
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- เผยแพร่เมื่อ 29 ก.ย. 2024
- "A Day in the Life" is a short documentary produced by CURE Epilepsy about a day in the life of one family living with epilepsy.
Kelly and Miguel Cervantes’ daughter Adelaide was diagnosed at 7 months old with infantile spasms, a devastating and difficult-to-treat form of epilepsy. This 30-minute documentary filmed in early 2019 when Adelaide was 3 years old focuses mostly on an average morning in the Cervantes home: medication prep and delivery, a tour of Adelaide’s room, getting their young son Jackson ready for school, a physical therapy session, and, amid the family’s morning routine, a seizure. It is, at times, a challenging watch.
Outside of an epilepsy monitoring unit, no one wants to see someone have a seizure. But in the words of Kelly Cervantes, “I think it is important to share this life. This was our normal, our so very not-normal normal - and remains a version of normal for 65 million people living with epilepsy worldwide and that will never be ok.”
Adelaide passed away later that year from complications of her many neurodegenerative challenges. Still, her story remains one that is important for those in the epilepsy community and beyond to hear and learn from.
We hope you will watch with empathy and an open-heart, and think of the 3.4 million Americans and 65 million people worldwide who live with epilepsy and experience their own version of this "day in the life" every day of theirs.
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My daughter had epilepsy from the time she was born to the time she passed away at the age of 13. It's very hard to watch your child have seizures
I'm so very sorry for your loss. I wish I had the right words, but there are no right words. Sending love xxx
@@mumofcuties5873 thank you so much
My condolences to you. My son started having seizures at 21, and they have continued. He's on meds, but it still happens. I'm still traumatized and go numb when he has one. I cried watching her.
@@iamLadyDanyellpray God is the only way to cure it
Did anyone else notice their little dog behind when she was having a seizure… It’s amazing how animals can sense these things
Animals are amazing! We have a cat, and she will sit and cuddle up to my daughter after she has had a seizure. Once whilst she was having one, she was sitting right beside her, keeping watch over her. My mother's dog was licking my daughters leg one morning and wouldn't move from her side. Sure enough, she had a seizure. Even my sisters dog one day put her paw on my daughters leg. My sister was telling the dog to get down, but the dog, normally very obedient, wouldn't. Sure enough, she had a seizure.
I thought it was sweet her big brother wanted to give support too when she had a seizure (that obviously should not be a job for a child), a dog definitely can give comfort during seizures.
I know, It is amazing. I have epilepsy myself. Before our dog passed away a few years ago, she’d always be with me in my bedroom every time I had a seizure. It’s also how my mum knew because our little dog would be sat with her in the living room and would just suddenly get up and leave the room and head upstairs to me. With mine being absences, I never knew when I was going to have one, when having one, or when I’ve had one. It really is horrible and I feel for everyone living with epilepsy. ❤
Yeah!! My puppy was like that. I was an Epileptic as a child to!! I love my puppy!!!
Yep, I noticed ❤
Why are the meds where the other child can get them?
There is a child lock on the cupboard. You can see it when it’s open.
Rip 🪽🕊️
This was so powerful. I feel humbled to have seen it. Thank you for sharing ❤️ I’ve followed the Inchstones blog for years- but this is the first time Ive seen video - and oh my goodness, Adelaide’s personality just shines..!!!! And it is just so, so clear in this how much love you all have. I’ll never forget about what an important cause this is. Much love ❤
Wow, didn't expect to see a comment from the one and only Gibi! How wonderful. Sending love from England ❤
They do such a great job explaining what is that's happening to Adelaide and the road blocks. It's so brave to share this and I hope it helps spread awareness and creates a ripple in funding for more studies.
I feel sorry for young boy seem like he want attention but parent to busy with little girl all time
Telling the brother to get back, get away is concerning.
It wasn't pretty but I'm glad they included that bit in the video, that seizure was not normal for her and her dad was very scared, so his response was more than comprehensible. The little boy is obviously well-loved and taken care of, but his parents are human and had to deal with bad/stressful moments like that. His sister is now in Heaven and they did everything they could to help her.
Yeah poor kid I know they were worried but they can’t take it out on him
He needs to back off when she is having her seizure.
Yes your right but his parents could of been more patient
The poor brother wants to be there for her sister
To be honest I am here only because I started talking to a lady how I did not know was epileptic. Anyway I find her quite amazing in some special way and now I have been drawn into watching and trying to comprehend what this is like for families. I am humbled PS: I like this lady and we are seniors..lol life is cool that way
Feeling so sorry for the brother 😢
It's all he's proberly ever known, some children are partially carers for mums, dad's, siblings they still have school and obviously his parents ensure he has a childhood yes I agree the little boys more like a mini adult, is that a good thing I don't know but he loves his sister
Yeah it’s hard he is wonderful but still must be difficult
BRO RIGHT!?
Thank you so much for sharing your story and for all you're doing to honor your sweet Adelaide.
Not much of a life for that poor baby.
I have epilepsy. I was about 5 years old when I started having them im 37 now. i have grandmal seziuers. they are very scary You don't know what's going on around you. You can't talk all you can do is scream in your head. And nobody can hear you, So I know exactly what this little girl is going through. I also take tons of medicine for it.. 💘
I have epilepsy and hydrocephalus I’m 41
Guess I'm that 3.4 million
The NIH has a program for patients with very rare, undiagnosed conditions that are likely genetic.
I had my first seizure when I was 9. It started off as an absent seizure, then turned into full body convulsions, where I was rushed to the hospital and diagnosed with epilepsy. I had 5 seizures in one day. I don’t know what the doctors did, but I went seizure free for 6 years, until my sophomore year of high school I started having seizures every day. Now I’m 18 and as of now, I’m seizure free. Apart from having absent seizures once in a while.
Finding a treatment that works can be a long road. Your experience reinforces our commitment to fund research to find a cure.
Damn you rock..keep on rocking in the free world too
Unfortunately every time a person has a seizure it does damage to the brain.
No words can describe the emotions felt watching this. Thanks so much for sharing your lives with us and for all that you do for the epilepsy community. You are a beautiful family and I hope that Adelaide’s lasting impact on this world leads to a cure for all children 💜💜💜
My name is Lachelle eliepsy
I have seizures
I Fom FLORIDA 😊😊😊😊😊😊😊😊😊😊😊😊😊😊😊
Thank you for sharing with us and for the education. I had epilepsy as a child from 7 years old. I have been seizure free since I was 14 years old. I will keep Adelaide in my prayers 🙏
What an amazing family! The love they have for their daughter/sister is absolutely beautiful, and it shines even through all the struggles they have. Whilst my daughter is drug resistant, and on 5 different meds, she isnt anywhere near as bad as this little darling. She has also just had a vns device inserted, so we have hope. I really have my fingers crossed they can find a way to stop Adelaide's seizures.
It says at the end she passed away in 2019 :( and that science couldn't catch up with Adelaide, but that they hope to be able to continue their efforts to help other children /people with epilepsy
@@Chelle8847 I must have missed that part. How terribly sad. RIP darling angel xxx
Yall are doing a wonderful thing for her. I had 3 seizures in my teen years. It was diagnosed as epilepsy. But it ended up as a hormone imbalance. They made me exhausted. I had trouble in school.
I had grand mals daily. They started after I started my menstrual years. They stopped completely 3 months after menopause. Damn hormones.🤨 I have no idea why all of the specialists I went to didn't consider something like that and try fixing it. I lost a lot of my life.
You are not alone. Many women experience changes in their epilepsy journey due to fluctuating hormones at different times in their life. We had a webinar on this topic that might be of help. You can watch the webinar or read the transcript there: cureepilepsy.org/webinars/womens-health-complex-interactions-of-epilepsy-medications-and-hormones/
Jackson is so empathetic and compassionate.
He really is. What a lovely little boy. Wise beyond his years. Bless him, this cannot be easy for him.
Such a moving video. My daughter was diagnosed with myoclonic Astatic epilepsy syndrome when she was 2 and our lives have never been the same since. It is completely heartbreaking seeing your child suffering with multiple seizures daily and we have not found any medication or treatment to stop it. Trying to find support and access services from our local authority and medical agencies has been difficult as we have been met with barriers. All you can do is keep battling. We will never give up on finding treatment and support for our daughter. I think it’s really important to share your own experiences to build awareness to epilepsy as a lot of people are quite ignorant about it and believe that you just take medication and that’s essentially the end of the issue. Thank you for sharing your family’s experiences and I am so sorry for your loss, I cannot imagine how difficult that must have been for you all. ❤
Hi, I'm new to your channel. And I just wanted to tell you that I knew a gentleman who took app dixiers. I don't use to look after him. When he was small, he couldn't talk at all. Finally, when he was seven, his mom said he would watch him t. V. Can you start the talk? He also had developmental challenges which means he understood, but not everything. My husband and I used to take care of him. And his seizures were the type where he would fall and his limbs would extend and we would have to turn him on his side with his helmet and on it. He passed away when he was 29. That's not to say every one with apology. Will, I'm glad that you are the mother that you are to your daughter and that you are showing the world. What can happen and how apparent should not be afraid of their children? When I was born I was born with a lot of problems. Cause my mom had German measles. Which left me partially blind hearing in parent. A heart condition and several other things. People want my mom to give me up. Including the doctors said that I would never amount to anything here. I am almost 59 year old later and I'm still here. I am able to tell the world how I feel. Nowadays people would disability need to be understood. We need to be carried about and people need to not judge our parents or us for the issues in our life. You're very nice lady. And I have already subscribed to your channel. So I'm anxious to see how this young lady does. I know this was taken a few years ago. But I want you to know that. No matter what happens, she's your child and no one else should ever make fun or make you feel guilty for being the mother that you are whatever you do. Don't let people on social media turn you into a bad person that you are not. People tend to say things they have no right to say. I know our little girl that has AM. C. What's your favorite condition where her limbs are not that coordinated. At least I think that's what they say about that. But I don't want to say something that may be wrong. So don't quote me on that. She's a beautiful little girl, she's 9 years old. She lived a good quality of life. She's had several surgeries she had to have braces. She had to have casting on her legs to keep her legs from nah. Having issues, that's the only way I can say it. The world is full of bad people that don't understand nothing. And I need to learn so social media is a good place to learn but. There are people that like to be trolls and make fun. Don't let it happen because no matter what there are still your children and you have feelings too. Thanks for showing your video. Thanks for letting us learn about your daughter. Add without people like you. People would never learn how to respect and love other people.
God bless you little princess
I want to see an update. I'm curious how covid affected this and the nurse coming. I want to see her today.
I wrote this before the end played. I'm so sorry :(
I COULD NOT FIND THE WORDS TO EXPRESS MY FILLINGS. ADMIRATION❤❤❤❤❤HEROES OF LIFE ❤❤❤
Sorry if I missed this part in your content, was the cause for your daughter's condition ever found? My 8 month is currently on treatment for Infantile Spasms. We got genetics back and she has a mutation in an potassium channel, a gene called KCNQ3. We're taking it day bay day as there is no other choice. Thank you for being so open and sharing how your days were (all those syringes :/), it really makes us feel less alone
Kelly and Miguel did do genetic testing to understand the cause of Adelaide’s epilepsy, and they have continued to do testing post-mortem to see what they could learn, and because what we know about epilepsy genes grows tremendously every year. Unfortunately, as of now, they do not know the cause of Adelaide’s epilepsy. This is another example of why it is so important for science to catch up with our children.
@@CUREepilepsy so true! Thank you for answering
This is my exactly my life!! My daughter had a prolonged seizure at 10 months. Not knowing what it was, we took her the ER at our local hospital who couldn’t didn’t manage it , they finally got the flight for life to take her Milwaukee. Unfortunately the damage was done. My daughter was not seizure free, and had a variety of them. We also tried different many types of meds. Unfortunately, none of them stopped her seizures. We tracked them and we had had seizure protocols when take her children’s hospital of WI. The doctors told us she wouldn’t live past 7, but with all the technology advances she lived to 26.
You have our deepest sympathies. We continue to fund research on epilepsy to prevent tragedies like this in the future.
Hi I know haw it fell to have epilepsy because I was diagnose with it praying for you akl
omg you have pedia sure my fav when i did't eat untill i was 7
Her father mother is going through very difficult time as well baby girl
I use to had seizures When I was three.
I had it when I was eleven.
I haven’t it for long time
my long-distance best friend has seizures (technically NESD but now they're looking more like epilepsy) and as soon as you guys mentioned it's been over her usual time I got freaked out. My friend has taught me that for her anything over 5 minutes without her acknowledging me means i have to call 911. she's gotten close and it's terrifying. (Most of the time she video calls me when her service dog alerts her to a seizure)
These stories are just like my life.. My daughter had a prolonged seizure at 10 months. They flew her on the Flight for Life to children’s Wisconsin ICU. They didn’t think she would make it another 24 hours. She did! With all the interventions, the doctors said she wouldn’t see her 7th birthday. My daughter had a team of nurses that took care of her while I worked. She passed away a few years ago and I miss her terribly. I love these videos .
There are some great bath chairs, tumbleform feeder seats, and wheelchairs. The baclofen pump was wonderful. Her tone improved. Botox in her neck and wrists. My daughter had three rods in her back, adductor releases on her legs twice, one with a hamstring release, Baclofen pump, g-tube. She took it all in stride. She was my trooper. She was almost identical to Adelaide.. thanks for sharing, I don’t feel like my daughter was the only one that was this incredibly medically dependent. Thanks, Jan
Thank you for sharing your story. We are so sorry to hear that research didn't catch up in time to help your daughter. We continue to fund research to one day find a cure.
Malheureusement beaucoup de personnes n ont pas de chance d
Avoir cette opurtonite d assistercrtte fin de vie.god is great
What a sweet little girl. I love kids and God bless your family. I hope one day epilepsy can be cured and no child with it will suffer again.
My son also suffering from seizure😢
I know what you are going though because I have epilepsy as well keep up with hard work I heart goes out with you all I will pray for you all love Sarah
Thank you for sharing your story. 🐞❤️
R.I.P. beautiful. Fly high and be free.
I would suggest the Anat Baniel Method for Children.
Hi, my name is Dillon, a great person and a daughter. You’re a great mom. She has a group chat with Brother. You guys are great parents.
Thank you Miguel and Kelly for sharing your story 🐞💜
Infantile spasms are annoying I know them from the LGS.😢
I was diagnosed with Epilepsy when I was 2 and had a Brain Tumor surgically removed when I was 8.
23 years Seizure free.
Congratulations on 23 years of seizure freedom!
Thanks for sharing. I'm still fighting tears. While my son isn't as medically complex as Adelaide, he has been suffering from intractable seizures for over a year. I can so relate to the sadness and confusion of always changing seizures and months of wondering where our bright, funny little boy had gone. New medicines, new doctors, surgery, therapy and never really getting answers. Thanks for sharing. I hate that anyone has to go through this, but it's also good to not be alone.
Thank you for sharing. As you said, you and your son are not alone. Many people diagnosed with epilepsy have seizures that are not fully controlled by medications or treatments. Experiences like this are exactly why we have to do further research into better, more effective treatments and, ultimately, a cure.
Prayers ops
God bless Amen
I absolutely agree. It's the hardest thing I've ever done, and you do feel alone. Especially when you can't make solid plans with loved ones 'just in case' Even making doctors appointments scares me, because we have had to cancel them due to seizures. I'm sure everyone caring for someone with epilepsy can agree that it's the fear of not knowing when a seizure will strike your loved one. Always on edge, and the trauma of seeing a loved one having seizures is heartbreaking. Then also watching your loved one become depressed about the things they miss out on. My daughter technically should be getting her learners permit next year. But she can't because of all the seizures she has. Luckily we still have some hope due to her having vns therapy. She will be at maximum dose by November, and we have our fingers crossed that this will at least stop the severity of her seizures. To everyone who is caring for someone with epilepsy, just remember you are doing an awesome job!
Thank you for sharing - so much love and positivity!
I understand there daughter is having a seziure but instead of constantly telling her brother to stop explain somethings happening.
That right he should give space so he doesn’t get hurt because people wi epilepsy or seizures can kick by accident but he is kid and probably was worried because he cared the mom or dad or nurse should explain nicely
BRO RIGHT?! poor kid
Yea I agree. He’s only little so he doesn’t understand, that will only make him more uneducated about it and not aware of what’s going on.
He needs to back off.
I was diagnosed with Epilepsy when I was 2 and had a Tumor surgically removed when I was 8.
23 almost 24 years Seizure free.
For five minutes
Wow this is hard but the her family especially her brother is so amazing and sweet
God bless the cute baby. God will heal her. Prayers with your family 🙏
Was she a normal child when she was younger before the seizures
I have HEDS, it causes MCAS and disautonomia. I’m also feeding tube dependent. Has she been evaluated for that?
Adelaide passed away in 2019. Kelly and Miguel did do genetic testing to understand the cause of Adelaide’s epilepsy, and they have continued to do testing post-mortem to see what they could learn, and because what we know about epilepsy genes grows tremendously every year. Unfortunately, as of now, they do not know the cause of Adelaide’s epilepsy. This is another example of why it is so important for science to catch up with our children.
My daughter has been put on Kepra-No chance at all the side effects are horrendous-Waiting on the brain scan and EEG so we get a proper diagnosis before giving it.
Rest in peace lovely ❤
Thank you so much for sharing, you are an amazing individual. God bless you for all you do for our community.
😢 my heart breaks when I see like this little child should suffer! I think the doctors not doing enough!! God bless you all family be strong this not easy to watch own child suffer!! Send u blessings!! ❤❤ lots of love ! 😢
Animals consent what's happening in the people. I hope people know that they consent a lot more than what you think. We could, they know they may not be able to tell you. But they know they get used to the person that is not well and they start to learn. And sometimes they consent that's something that's happening. That's why they have dogs for apple lepsi dogs for diabetes. The scroll up imagination. What animals can do II have a dog and she's like a comfort animal to me. She goes with me. She doesn't need to be trained, but there are dogs that need train to know what to do for a child. Or an adult that needs help. So I think that we all like. I say can learn a lot. From parents who have children who are affected with different disabilities an arch able to communicate. But they find their own ways to communicate with you like their eyes and stuff like that.
I'm not an expert. I'm just a human being like everybody else. But I bet around a lot of people. I have a friend who. Has circle 1000 he can't walk and you can't use his hands. And he can't talk, but he had a computer on his wheelchair and he has a head rust on his wheelchair and when he uses that it helps him to communicate to us. Fruit a computer and his computer talks to us and tells us what he is saying. Some kids are able to do things like that. And some kids aren't and some adults are able to and some art. I just know that we need to be tolerant. I'll be each other and understand
i have seizures too and call my post ictal state a post seizure hangover cuz i have severe vomiting and migraine and light sensitive lol
😢 brother Jackson mommy daddy loving family Adelaide before passed away
I have Intractable Epilepsy and I am on 5 different seizure meds and I have a VNS implant for my seizures to and my dad only raised me and my Epilepsy came when I was 6years old and my dad raised me tell I was 20 tell he passed away now I am 24 and I live alone and am in college
❤ have a health full future Doni
I've been dealing with seziures for my whole life and it's scary but i try to look on the bright side of things when I can
My friend Ella passed away from epilepsy and I miss her dearly and have a place in my heart for her
Thank you for sharing. God bless.
It seems that it is taking sooo long to prepare and get her rescue meds to her!
She is a lovely cute little girl. May the Almighty God help her.
I'm in tears poor baby
How’s she doing right now
Adelaide passed away in 2019. Kelly and Miguel did do genetic testing to understand the cause of Adelaide’s epilepsy, and they have continued to do testing post-mortem to see what they could learn, and because what we know about epilepsy genes grows tremendously every year. Unfortunately, as of now, they do not know the cause of Adelaide’s epilepsy. This is another example of why it is so important for science to catch up with our children.
@@CUREepilepsy oh I'm sorry to hear that... May God bless the family
Yell have a Beautiful family God bless yell❤
Seizures feel better soon
I say you're so I know hot feels
God bless you Beautiful mother
beautiful girl
How is she
I have epilepsy
She’s suffering cereal pullsy
My son also su
Inshalla, She will get better
Unfortunately at the end they write that she passed at four yours... 😢
How is she
Adelaide passed away in 2019. Kelly and Miguel did do genetic testing to understand the cause of Adelaide’s epilepsy, and they have continued to do testing post-mortem to see what they could learn, and because what we know about epilepsy genes grows tremendously every year. Unfortunately, as of now, they do not know the cause of Adelaide’s epilepsy. This is another example of why it is so important for science to catch up with our children.
I think brain surgery could help her. First they map out the brain as part one. Then they find out where the seizures are coming from, and part 2 is the surgery.
Sadly she passed away.😢
@@DD-pt9qw Gee that is to bad. Seizures are a bad thing, and they can kill you.
🙏🏽💟
Thank you so so much for sharing your story and also I send all my prayers love condolences to you and familie 😭😭😭😭😭😭🙏🙏🙏🙏🙏🙏❤️❤️❤️❤️❤️
💜
This made me cry man she's so beautiful 😍❤️❤️❤️
I wish I could hold that family tight. I am so sad to hear of her passing. Her family gave her such a wonderful life with so much love. I am in nursing school. Thank you for sharing this, it will help me in my career.
What an amazing family ❤. Everyone should see this shared experience
I know how y'all feel, I have epilepsy and non epilepsy seizures and I'm 54yrs old. I'm praying that they come up with a cure for it. Praying for y'all!
Epilepsy is such a complex thing. I was having seizures when I was a child then it stopped. And I didn’t have any big seizures for twenty years. I had absent seizures once in a while, but I was meds-free. Then, one Tuesday afternoon, out of nowhere, I had a very big seizure I couldn’t recover from for an hour. Now, I am taking ant-seizure medication. There is life with epilepsy, even though it changes very quickly.
Have you looked into medical cbd oil?
We had an episode of Seizing Life on this topic. You can learn more about that here: www.cureepilepsy.org/seizing-life/medical-cannabis-a-life-changing-journey-for-mother-and-son/
I could be sand Filippo syndrome
Adelaide in. Australia
Your daughter is walking ?