Aiden is 16 years old, and WOW what a fighter he has been. He is sweet, kind, caring, hilarious, a lover of music and taking pictures. He has the biggest heart for people. He was born a chubby giggly healthy boy in 2007. I’ll never forget his first seizure, he was 10 months old. We were driving home in a torrential downpour and his 3 and a half year old brother alerted me that he was making a weird noise and shaking. What I saw in my rear view mirror is forever etched into my mind. I lost my sweet boy that day, twice. I was able to perform CPR and bring him back the first time, and they were able to bring him back in the ambulance the second time. The damage was extensive though after not breathing for a combined total of 3 minutes. That was the beginning of our Dravet journey.
Aiden spent his 1st birthday in the hospital on a ventilator. Over the next 2 years we practically called the local childrens hospital our second home. He was mostly having status seizures at this point which required close monitoring in the Intensive Care Unit because they could for several hours at a time.
By his 3rd year of life he was having seizures daily and on 6 different medications to try to keep them at bay. Nothing was working very well. I had to watch my sweet boy slowly slip away. Aiden had to relearn everything at this point. He had to learn how to walk again. Hold a spoon again. Talk again. Crawl again. He lost almost all of his skills. The damage was extensive.
Over the next several years, up until about the age of 8 years old, we spent countless nights in admissions to various hospitals, and countless hours trying to beat the life flight guys to the hospitals just in case that was the time that we lost him. This is the time frame that through genetics testing we were also able to confirm his diagnosis of Dravet syndrome. The emotional toll it takes on families cannot be put into words when you find out that your child’s entire life will now be altered and then to be told the odds of survival past adolescence are not high is devastating.
Aiden slowly was able to find good combinations of medicines to help slow down the seizures. As he progressed through adolescence and into his teen years the seizure control became even greater, going from daily to weekly to monthly seizures now. Aiden will always struggle with motor skills and will forever be locked in at about 7-8 years old mentally. He has worked so very hard to overcome the challenges he faces from having Dravet syndrome. Aiden has several seizure triggers. Getting overly excited, not getting enough sleep, having a fever, and especially being sick. Any little illness will trigger seizures. We have to be very vigilant about not allowing him around others when they are sick. For Aiden, it can be life threatening due to SUDEP (Sudden Unexplained Death in Epilepsy). He requires monitoring while he is sleeping and close monitoring while at school.
Aiden has an amazing support team amongst our family and his school and team of doctors but even with all of that it isn’t enough. Dravet syndrome is not who Aiden is though. It doesn’t define him. He is such a blessing to everyone he meets and no one ever forgets him. We need a cure for Dravet syndrome. And we need it sooner than later. Because of this, Aiden has participated in several clinical trials and some have led to great success with medications. But we need help from the community to spread awareness and to raise funds for more research. So help us to raise awareness because we have so much more work to do!