SUDEP Action

Making every epilepsy death count
Call us now on 01235 772850

Maycee Marie

My beautiful angel Maycee Marie was a vibrant, loving amazing little soul – only seven-years-old.

She was ready to celebrate summer so she could go to the water park to ride the BIG slides and go watch the Texas Rangers game. Exactly one week out of school for summer on June 1st,  we were at the pool, her with her lifejacket and goggles on as she entered the water. I laid my towel down on the edge of the concrete to get comfortable and enjoy watching her whilst catching some rays. Not even 30 seconds later, I saw her floating on her back. I immediately got her out, started CPR and called 911. I was completely devastated. I was in shock. How did she drown? She was brought back twice but never came out of the coma. She passed away on 6/6/23.

Sharing is caring as she would say so we decided to donate her organs. She had epilepsy and was never diagnosed with anything else, no hereditary genes (these were tested). They could not figure out why she was having the number of seizures she was having. She’d had them since she was an infant, a mixture of tonic-clonic, absence and drop seizures. At one point she was experiencing between 300-500 a day. It was absolutely horrible to watch. I really thought that she was getting better and outgrowing them. I feel like something was missed and her epilepsy was far worse than we were told and I think she lived a very hard and uncomfortable life. That breaks my heart because you would have never known or guessed it by looking at her. I had never heard of SUDEP (Sudden Unexpected Death in Epilepsy) and she also had no history of heart issues but went into cardiac arrest as well.

So, if you or anyone you know has epilepsy, make sure you share the awareness. I don't think it would've made her death any easier but I wouldn't have been in complete shock. I'm sharing my story so maybe I can help out someone else. There's nothing that can be done to stop it, if it happens it's going to happen, there is no prevention. It happens to 1 in 1,000 epileptic patients with only 18% of those being a juvenile. I question almost every single day, why her? She could've been anywhere but we just happened to be at a pool, bless her little heart. She had just stepped foot in and literally less than 30 seconds later she was gone.

I was very blessed to have had her for seven short years. She had a contagious smile and laugh, she was everyone's friend, she was an angel way before we actually knew it. Her birthday was 1/11 and her death date was 6/6, angel numbers. She made a huge impact on family, friends, teachers, peers and our community. It really touched my heart to see and hear all the different ways she did so. What an inspiration she is. There's not a day that goes by that I don't cry or think about her and I miss her. But, with school starting and holidays coming quickly, my heart is hurting extra right now.

She was so excited to be a big girl who was going to second grade. Seeing all the school supplies and backpacks has my heart breaking that she's not here to experience that. Of course, like most kids she loved Halloween, Christmas and, of course, her birthday. It’s going to be tough this year with all the firsts without her.

I'm so glad we provided her with an awesome life and she was always happy and smiling.

I miss and love you so, so much baby girl. It’s not ‘goodbye’… it's ‘see you later’.

Lynzee, Maycee’s mom