Raising SUDEP Awareness to Honor Marquis
By Tanisha Graves
My son, Marquis Devon Chapman, started having seizures at the age of 5 months. It started off as febrile seizures and later turned into tonic-clonic seizures. It took doctors several years to diagnose why Marquis was having seizures.
I wanted my son to have a normal life like others kids his age, but he would have seizures that limited him and our family from participating in activities and functions. When he felt auras, he tried fighting them off before a seizure happened. In his postictal state, he slept because his body was so tired after tonic-clonic seizures.
Marquis took several medications, had vagus nerve stimulation, a Mickey button and port-a-cath, an implanted device that allowed doctors access to his veins to administer epilepsy treatment. It was difficult to control his seizures and we needed safety devices to help us with his care, which were challenging to obtain due insurance costs. We were not aware that there were organizations that could have helped us because no one shared that with us. We didn’t know people can have seizures that compromise their heart and lungs causing sudden unexpected death in epilepsy (SUDEP), which is what happened to Marquis when he was 26 years old. If we could have been alerted, maybe we would not have lost him.
Since losing Marquis, I have become a listening ear and an advocate for those with epilepsy. Many people I have spoken with lack support and understanding when it comes to dealing with epilepsy, so I founded a nonprofit organization to help parents get peace of mind by providing safety devices for kids while they sleep. I provide support in many Facebook Group and online communities, and have been invited to speak about healthcare disparities. I have also helped a research team with ideas for new device or medication that will aide in stopping seizures.
Through my work, I hope to be a voice for so many that are no longer here due to SUDEP. I continue to hold annual events to honor Maquis’ life and bring education and awareness to epilepsy. Never give up on your child and love them no matter what. If you don’t understand something, ask questions. In doing so, you can be there for your child and be the best advocate that you can be.
Reviewed By: Sara Wyen