Gladiator X Project
The Story
Xavier, who is the 14 year old son of Alex and Mandy Marconi, was born with CHD2 Gene Mutation resulting in Autism Spectrum Disorder and Intractable Epilepsy. Xavier's epilepsy diagnosis is Lennox-Gastaut Syndrome. LGS is an epileptic encephalopathy with progressive impairment in cognitive and behavioral abilities. At age 5, Xavier started having seizures and for the last 9 years he has had very few seizure free days with his worst of days/weeks resulting in upwards of 300 seizures per day.
Xavier was first diagnosed in December 2016 with atypical absence seizures. Xavier's first generalized seizure was noted at age 5 February 2017. He then exploded with many types of different seizures throughout the following 23 months. Xavier was diagnosed with CHD2 Gene Mutation January 2018. He was later diagnosed with Lennox-Gastaut Syndrome April 2019 following trends/patterns of EEG readings.
Xavier has trialed numerous medications and currently takes 10 different meds, some multiple times a day. He had a Vagus Nerve Stimulator (pacemaker for his brain) implanted in August 2018 which currently is programmed to go off every 1.8 minutes (800 times a day). Xavier then underwent a corpus callosotomy (brain surgery) on November 2, 2018 in order to help decrease his full body atonic drop attack seizures as well as preserve his cognitive ability.
Xavier Blaine Marconi is the inspiration behind Gladiator X Project.
Xavier, 14, is currently an eighth grader at Wings of Change Therapy, INC. He is a very determined young boy who simply loves life, which he plows through with resilience and strength. Xavier is a defender, relentless warrior and a true spiritual leader. His zest for life is contagious while he continues to tackle obstacles that come his way.
Gladiator X Project remains committed to raising awareness around SUDEP through the distribution of seizure alert devices along with helping with immediate needs for those undergoing epilepsy treatment. The Gladiator X Project has raised over $200,000.00 through various fundraisers/grants since December 2018. Gladiator X Project is an established fund at Akron Children’s Hospital in Akron, OH. GXP was the Spring 2023 grant recipient of $35,000.00 from 100 Women Strong. The grant provided 100 seizure alert devices for 100 children living with epilepsy. Gladiator X Project is now its own 501c3 stemming from a desire to help.
Epilepsy By The Numbers:
1 in 26 Americans will develop epilepsy in their lifetime.
An estimated 3.4 million Americans and 65 million people worldwide currently live with epilepsy.
Each year more than 150,000 people are diagnosed with epilepsy.
An estimated 470,000 children in the US live with epilepsy and approximately one in 150 children is diagnosed with epilepsy.
33% The number of Epilepsy patients who live with uncontrollable seizures because no medications work for them.
Epilepsy affects more people than multiple sclerosis, autism spectrum disorder, cerebral palsy, Parkinson’s disease, and ALS combined.
I just had to hop on tonight to say how hard you work at your job. The embrace watch has been a serious life saver. I sleep so much better knowing that I don't have to worry about missing a seizure or (....) dying in her sleep. She just had a bad seizure and couldn't call out, but the watch alerted me and I was able to sit with her to keep her calm while she recovered. You have no idea how much it is helping (....) feel comfortable sleeping in her own room because she knows the watch will call me. I am so thankful you were able to get that grant. Seriously, thank you
We have had a very rough summer. I have an 11 year old daughter who has gone through many ups and downs in her life already. She lost her teenage brother when she was 9 years old. She has spent most of the 2023 summer having multiple seizures a day. In the beginning, her mental health started to become low. She often referenced, she feels like a 2 year old, she has no independence now, etc. Her neurologist presented an option to help with that. She advised the use of the Empatica watch. She was very excited to regain some independence and feel like the very much preteen she is. I am grateful that the empatica watch helped to boost her mental health.
The Epilepsy Foundation Award Winning Sleep Monitor
SAMi is a nocturnal movement monitor and will detect all types of movement regardless of the movement’s origin. HiPass Design LLC. does not guarantee the effectiveness of SAMi for any particular application and use of SAMi is solely at your own risk. SAMi has not been evaluated or approved by the U.S. Food and Drug Administration or any other government agency for any purpose. SAMi is not a medical device and is not intended for use in the prevention, diagnosis, mitigation, treatment, or cure of any disease or other conditions. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Hello,
I wanted to drop by and express our extreme gratitude! Our SAMi camera was dropping its signal and failing, even after doing all the trouble shooting provided by their customer service. My son's bedroom is right off our living room so my husband and I were sleeping out there, that way when something happened in the night we'd be able to hear him and his alarms and run right in. We tried using an older baby monitor but it wasn't nearly as good or reliable as the SAMi. We found that SAMi sells a router that is meant to be used by the camera and connected to iPads only, and had been doing some research and deciding if it was the way to go.
We mentioned our problem to the team at an appointment and we were given gift cards from GXP to purchase the SAMi router. It's been working great an we've had no problems with it failing since we hooked it up.
So THANK YOU for helping us to get that peace of mind back when it comes to monitoring him while he sleeps and knowing that he's safe. We appreciate everything your organization does, and what a positive difference your generosity made for us!
I just wanted to tell you guys THANK YOU from the bottom of my heart for this work you do with Gladiator X. I never wanted to join the epilepsy club with one of my kids but here we are and we were able to purchase a SAMi monitor with your gift cards. My daughter was diagnosed with generalized and focal epilepsy and we started Keppra. We just got the monitor and I'm so excited to get it set up, get my kids sleeping back in the their rooms and not feel terrified when I go to bed if I'm not right next to her. Thank you thank you thank you!!!!!!!
Gladiator X Project
Please reach out via email, Facebook or Instagram. Thank you for your support. A need within the immediate needs has been identified and we want to help! To all the Gladiators..... YOU are an inspiration!
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