Hayden was born 12/22/08. A perfectly healthy beautiful baby boy. As a baby he hit all his milestones on time, no major health issues other than asthma and a hernia when he was 18 months old. So, when he had his first grand mal seizure on September 23, 2014, we had no idea what was going on or what to do. The next week in Rady’s Children’s Hospital PICU in San Diego was a roller coaster of emotions. We had so many questions but first we needed to know that our baby boy was going to be OK. We were told that first seizure lasted longer than 6 hours, but we will never know how long it actually was, because they sedated him and kept him sedated for the first 36 hours. His dad and I were going crazy not knowing what was going to happen when he woke up.  If there was brain damage or any permanent damage to our 5-year old baby boy.  When they finally turned off the medication that was keeping him asleep - he opened his eyes and said, “hi mommas”, it was the greatest sound.  He had no permanent damage at all, but it took him about a week to fully get back to himself.  The first day back to school was one of the longest days of my life, constantly checking my phone to make sure I didn’t miss a call from the school.  I thought I worried a lot about the kids before his seizure.

Our life changed that day in Sept 2014- in so many ways.  Hayden changed- he used to love to run! He would run around our driveway (we live on 2 acres) every day.  He would ask his dad to tie caution tape across the driveway for a finish line, he loved running thru that caution tape.  But he never did that again after his first seizure.  He now gets tired quickly or gets overheated and he has a really hard time controlling his emotions. School has proven to be our biggest challenges at the moment.  He has developed a learning disability due to the seizures. We had to change schools because his home school didn’t have the correct program for him.  Every day he gets so frustrated with himself because he can’t remember something that just happened or where he set his toy down just 2 mins ago. He sounds like he has a stutter sometimes but it’s only when he has forgotten the words to describe something.  Hayden used to have tons of friends but now due to not being able to control his emotions, he is constantly supervised, and kids don’t want to always play when there is adults watching every move they make. He is on daily anti-seizure medication and the side effects are horrible. Which that, in itself, is such a challenge to find one that will not negatively affect his behavior or cause damage to his body and mind permanently.  We thought we had found a med that had stop the seizures but as he has not had a Grand Mal lately, we do think he is having multiple absentee seizures daily.  As a mother it kills me that I cannot take this burden from my son so that he may have a life he can enjoy and experience all the things a kid should be able to.  

In 4 years, not one doctor has been able to answer the most important question “Why?” “Why did he start having seizures?”  His neurologist has done multi test and everything came back as normal - but my husband and I are not going to just accept that answer since the meds are controlling the seizures there is nothing more to do if all the test are normal. Having a seizure is not normal - there is SOMETHING that is causing my son to have seizures. My husband and I are constantly searching for any and all information to try and help our son.  After a few strange events we took Hayden to see an Upper cervical specialist last Thursday 11/29/18.  After 3 X-rays of Hayden’s neck, the doctor showed us how 5 out of the 7 vertebrae’s in Hayden’s neck are misaligned and putting pressure on his spinal cord.  His atlas (most important vertebrae as it protects the brain stem) has been misaligned in two directions.  This is most likely what is the cause of the seizures along with his inability to control his emotions among so many other things.  Hayden started treatment on Monday and has already shown such improvement it is unbelievable.  He needs to be seen 3-4 times a week to make sure the adjustment made to his vertebrae are holding.  His father and I are overwhelmed at the very real possibilities this new information and treatment has opened upfor our son. We finally have a direction to go in to help our son overcome the challenges that he has had to live with for far too long.

However, with this wonderful news also comes with a huge challenge for us as his parents - how to come up with the funds to pay for this treatment.  We have cut back in every area we can. We both work for an amazing man, who has been incredibly understanding when we couldn’t work because we had to take care of our son.  The stress has been overwhelming at times. So much so, that, at the age of 38 my husband had a heart attack. Thankfully he is ok, but that was a huge wakeup call that we need to take care of ourselves, so that we can take care of our two beautiful kids who are our world.  I am not one to ask for help - but we need help. Hayden needs this treatment so that he has the best chance at living a happy healthy life.  Anything you can do would be greatly appreciated and will go towards paying for Hayden’s medical bills.

 We understand this is the hardest time of the year financially for most. All prayers, positive thoughts and sharing this post would also be greatly appreciated. 

Thank you for taking the time to read our story. 

Gabe and Marcia Riley