This is dedicated to the memory of Robert B. Hewitt a beautiful young boy who loved LIFE and who loved to fish taken way too soon by epilepsy.
Robbie Age 13
Robbie was born on July 3, 2001, when he was 11 years old he was diagnosed with epilepsy intractable, complex partial. Sadly Robbie passed away on July 2, 2015, at the age of 13 we went from a stable, happy, normal family to one dealing with 7-minute gran mal and status seizures, to a failed surgery, to SUDEP (SUDDEN DEATH DUE TO EPILEPSY) all within the time span of 2 years.
Intractable epilepsy: Intractable epilepsy is a seizure disorder in which a patient’s seizures fail to come under control with treatment. These seizures are sometimes also called “uncontrolled” or “refractory.” Frequently intractable epilepsy interferes with a patient’s quality of life. People who are not seizure-free need to be careful about possible accidents during a seizure. Patients with intractable epilepsy need to take caution while in water, near busy streets or railway platforms and often are unable to drive.
Complex Partial: Complex partial seizures last 1 to 2 minutes. These seizures may have an aura (or warning). Complex Partial Seizures include automatisms (such as lip smacking, picking at clothes, fumbling), unaware of surroundings or you may wander.
Gran Mal Seizures: A grand mal seizure also known as a generalized tonic-clonic seizure features a loss of consciousness and violent muscle contractions. It’s the type of seizure most people picture when they think about seizures in general. Grand mal seizure is caused by abnormal electrical activity throughout the brain.
Status Epilepticus: Status epilepticus is said to occur when a seizure lasts too long or when seizures occur close together and the person doesn’t recover between seizures. Just like there are different types of seizures, there are also different types of status epilepticus.
Over the last several decades, the length of seizure that is considered as status epilepticus has shortened. Years ago, a seizure needed to last longer than 20 minutes to be considered status epilepticus. In the last few years, it is now defined as any seizure greater than 5 minutes. This makes sense because most seizures do not last longer than 2 minutes. The longer a seizure lasts, the less likely it will stop on its own without medication. Very long seizures (i.e. status epileptics) are dangerous and even increase the chance of death. It is important that these long seizures are identified early, so they can be treated early.
Robbie pre-TBI was an avid BMX racer and loved to play soccer. Afterward, the BMX had to stop because of head injury risk. He loved to roller/ice skate and play football until seizures made him stop.He was an amazing artist-especially drawing trains and dragons and was always in the kitchen making something from scratch. He was a water bug from the time he was a baby, and when seizures forced him out of the water, he went fishing every chance he got.
Robbie, Enjoyed making people laugh with his quick smile, huge dimples, and infectious belly laugh. He left such an impression on everyone he met. He also loved spending time with his brother, playing chess, street hockey, or drawing together. He was my partner in crime, always willing to help out in any way. He enjoyed working in the yard, tending his vegetable garden, or sitting on his fallen tree just lost in thought. Robbie, and his brother Steven my everything.
What I want to be advocated most about epilepsy is a more frequent discussion about SUDEP, what it is, the dangers, the risks. I want more of the general populace educated about SUDEP, for Doctors, Nurses, those in the medical field to talk about it more before it happens not after it happens. Many parents are not even aware of SUDEP it needs to be made public. I want more help for single parents dealing with a special needs child. Financially it’s been very stressful and overwhelming missing work as a single parent. Hospitalizations and now two years later still having to pay off medical bills.
My older Son gave up his high school social life to watch his little brother while I worked, missed work for me due to seizures, and hospital stays, and now after losing Robbie to SUDEP how to carry on and live my life without him. Before Steven wished for Robbie’s seizures to stop, now he just wants his little brother back.
Message from the founder of the Epilepsy Warriors Foundation:
I have had to write this many times that when a child dies, it is one of the hardest things in life to understand. We have lost so many children to Epilepsy and again we are looking into the tearful eyes of their parents, and we see one another. We know that without divine help, we could not bear that pain. We think about a precious life snatched away before it was fully formed, like a flower snipped from the stem just as it was beginning to bloom. We question “Why” but only God knows the real answer to that question.
Robbie is another one of our Angels that is going to be with each of us helping us in our cause and advocacy work that we need to get done we need to find a CURE. Now more than ever we need to kick it up a notch and really start fundraising and giving more to epilepsy.
If I can offer any peace or comfort to you Rhiannon & Steven as its so hard words never come easy and people really do not know what to say I can offer you this. I sadly have offered this to so many other parents who have lost a child and I believe in my heart for this to be true.
Always remember the good times, there were many, always remember he loved you, he did, always remember that infectious smile, it’s in your heart beating. Remember that even though he is no longer physically with us he has never left you, he is in your heart and soul, when you look up to the heavens at night and you see the brightest star sparkling like diamonds in the sky that is Robbie winking at you saying “Hey Mom & Steven don’t worry I am doing great, you taught me that” when you see a rainbow after a storm that is Robbie telling you “Thank you for calming my fears and keeping me safe for seeing the beauty in me through my eyes” When you hear the rain that is Robbie telling you “Hey don’t cry you gave me the best of everything, you gave me the best thing a boy ever needed and that was a family” when you see a butterfly outside or in your garden know that it’s Robbie he is telling you Mom, Steven I am finally free you were there for me always now I can be free to help you give back for all you gave to me. Celebrate his life for their is much for you to celebrate and know that one day you will see him again and what an occasion that will be.
Robbie, thank you so much for touching all those who knew and even those that did not know you personally but only through our extended family it was an honor, privilege to know, learn about and love you. You taught us all about fighting and staying strong, you taught us about amazing grace, courage, and dignity. You taught us about character and integrity, you gave us the hope we all needed and we will honor your memory every day. Epilepsy will not win this battle and we know you will be helping to guide me the foundation as well as your Mom and Brother Steven over the years so that we can stop the madness and find the cure. God Bless You Sweet Robbie
If you would like to help us or any of the Ambassador Warrior families chosen through the Epilepsy Warriors Foundations Ambassador Program you can do so through this website. Thank you for your support, understanding towards all of us.