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Skyler Jade was given to us on July 2, 1997 she was what seemed to be a healthy baby girl.. At 10 months old she was diagnosed with a deletion of the 13Q chromosome - after being sick a lot - and failure to thrive.. Skyler's 1st year was really rough but she got stronger and stronger as years went on.. She was a very happy, loving and appreciative lil show boat.. Always smiling and always making everyone around her smile.. She was such a blessing and we learned so very much from her.. In Sept. 2008 Skyler had her 1st seizure. She was hospitalized for 3 days for observation. After getting out of the hospital and being given antiseizure meds, I thought, ok just another thing we have to get passed.. So things went on and Skyler seemed to being doing just fine.. She went on Jan. 20 for testing to find out what type of seizures she was having.. They performed a sleep deprived EEG and had me skip her dose of meds to get more accurate results.. On Thurs. Jan. 22 we returned to the dr. to get the results. That's when we were told they were Epilepsy seizures and I was then told that as long as she took her meds she could go on as she always has and would be just fine.. On our way home, the dr had me stop and have blood work drawn to check her levels on the meds in her blood and then we went on home... Skyler took a nap when we got home, still trying to recoup. from the sleep deprived EEG but seemed to feel just fine.. She got up that evening when dinner was ready and ate and played a while before bedtime. She laid down at around 10PM and smiled as usual and we told one another that we loved each other and gnite and sweet dreams as I always do every night with my kids. After getting them to bed, I continued to get ready for bed myself. I stopped in her room aprox. 40 min. later just before going to lay down and she was laying face down in the pillow.. I of course went to turn her head to the side and that's when I realized she wasn't breathing. I started CPR immediately and had my brother in law call my brother.. He showed up and took over. We had already called 911. It took them over an hour to get an ambulance to me and I was of course devastated. I couldn't ride with her so I had to be driven behind the ambulance and I prayed, that's all I knew to do. It was the worst day of my life by a long shot. I still had hope though that she would pull through this but when I seen them taking her out of the ambulance and still pumping on her little chest and her still purple, I knew.. I knew god had called her home. I called the dr the next morning to let them know shed passed and that's when she decides to tell me about what's called SUPED (sudden unexpected death in people with epilepsy) and told me that more than likely that's what caused Skyler to pass. I had a on my mind and wasn't thinking straight and didn't give it much more thought. So after the funeral and everything was over with I decide to look up SUPED and do some research for myself where I find that I should've been told to at least have Skyler sleep with me if the dr couldn't go over the risks of SUPED. Drs feel don't ask don't tell and I think that's wrong especially considering and I find in a of the info that people with learning disabilities, sleep deprivation, skip of meds and the hormone changes (Skyler was starting puberty and the dr knew) I felt so let down by her dr. I feel that we as patients and parents deserve to know it all, good with the bad.. My main goal now is to make SUPED known. I miss Skyler everyday of my life and some days I don't even know how I'm going to exist. I don't want another individual to have to go through what I have and feel that it was due to a lack of information. Please let everyone you know about SUPED because we are all we have is each other.. Thank you...