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 | My Message
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My story starts about 3 years ago, just a few months after having my son Wyatt. I noticed at times he looked like he wasn't present. A blank stare came over his face and his eyes would start twitching. It was very subtle, lasting only 15 seconds or less, but as a mother, I knew something wasn't right. After two doctors told me that seizure like activity was normal for babies, I finally got a third to at least order an EEG to see if anything abnormal was going on. The earliest they were willing to schedule us was another 4 months later and by that time he was having 20-30 "episodes" a day. He was falling over and constantly getting hurt. I remember that horrible feeling of knowing something was wrong, but still hoping I was just crazy and the test would come back normal. That day, we went in and had the EEG done and they said they would like him to see the neurologist immediately. My heart sank. I asked what was on the test and if he was having seizures, but they said my questions would all be answered by the neurologist. The neurologist said they did record seizure activity and then proceeded to tell me what they found. At that time, I knew NOTHING about seizures or epilepsy, so all I grasped was they thought he was having "absence seizures". I researched for hours at home trying to make sense of what it all meant, but realized how unknown seizures and epilepsy are to even the professionals.
Now, Wyatt is 3 and he is on his third medication. Finding the right medication was so stressful. The first made his seizures worse and he was having close to 50 a day. The second gave me a sense of relief because the seizures had stopped, but then it stopped working too. Luckily, he has been on his new medication (Lamictal) for about a year and he's been close to seizure free that whole time. I am so grateful that he has been able to continue to do all the normal activities that kids his age are doing. He is a great big brother to his little sister and he is the sweetest, most caring, cuddliest mama's boy on the planet.
I decided to run the Chicago Marathon with Team Danny Did just by chance. I had been having a rough month with the kids being sick, and Wyatt having a couple febrile seizures. It was the first time I had ever seen him convulse and it was the scariest experience of my life. I was stuck in my thoughts and let the commercials play on the radio. Then I heard a PSA by Danny's brother about the Danny Did Organization, that was started by the parents of Danny, a little boy who died from SUDEP (Sudden Unexplained Death in Epilepsy). It just felt like I was meant to hear it. I read their story and I just connected with it. I want to be a part of a Team Danny Did to spread awareness for epilepsy and SUDEP.
Every day, I worry. I worry about whether Wyatt's medication will stop working. I worry about SUDEP. I worry about Wyatt regressing in his development or his epilepsy getting worse. I worry he won't be able to do all the things he wants to do when he grows up. There are a million and one worries that I have, but the best way I can think to help those worries subside for me, for other parents of children with epilepsy, and for those suffering from epilepsy, is to be a voice and encourage and promote and raise funds for epilepsy research, resources, and education.
I appreciate every single one of you that is here to support me on this journey and to support this amazing Organization. Go enjoy your life, Danny Did!
Thank you,
Amanda
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My Goal:
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$1,500.00
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Amount Raised:
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$1,691.22
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About my cause:
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Founded by Chicagoans Mike and Mariann Stanton in January 2010 after the sudden death of their four-year-old son Danny, the Danny Did Foundation’s primary mission is to prevent deaths caused by seizures. The Foundation is dedicated to advancing public awareness of epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP), enhancing the SUDEP communication model between medical professionals and families impacted by seizures, and gaining mainstream acceptance and use of seizure detection and prediction devices that may assist in preventing seizure-related deaths. Epilepsy affects nearly 3 million people in the United States and 65 million people worldwide. One in 26 Americans will develop epilepsy during their lifetime. The name of the Danny Did Foundation originates from the last line of Danny Stanton’s obituary, written by his dad: “Please go and enjoy your life. Danny did.”
Our 2015 Team raised over $60k last year and those funds were used to help place seizure detection devices in homes across the country. These devices alarm a caregiver during a seizure which can reduce the safety risks often associated with seizures. Parents appreciate this peace of mind and are thankful for the chance to address a seizure and keep their loved ones safe. We plan to beat that team fundraising number in 2016, and we hope you will be part of reaching this goal. Thank you for your support! To learn more, please visit www.dannydid.org.
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