A Day In The Life of Epilepsy

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.

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 ❤

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. ❤

Did anyone else notice their little dog behind when she was having a seizure… It’s amazing how animals can sense these things

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

Thank you so much for sharing your story and for all you're doing to honor your sweet Adelaide.

Jackson is so empathetic and compassionate.

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 🙏

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 💜💜💜

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.

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

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.

Thank you for sharing - so much love and positivity!

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.

Feeling so sorry for the brother 😢

Thank you Miguel and Kelly for sharing your story 🐞💜

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

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.

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 for sharing your story. 🐞❤️