Support the Gladiator X Project

Gladiator X Project

The Gladiator X Project is an established fund within the NeuroDevelopmental Science Center at Akron Children’s Hospital. GXP resulted from the inspiration to provide comfort and support to patients undergoing epilepsy treatment at Akron Children's Hospital.

Xavier, who is the 12 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 7 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 8 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 colostomy (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, 12, is currently a sixth 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 is committed to raise money for the immediate patient and family care needs on the neurological unit at Akron Children's Hospital. The Gladiator X Project has raised over $150,000.00 through various fundraisers/grants since December 2018. We were elated in September 2019 when Gladiator X Project was officially established as a fund at Akron Children’s.  GXP was the Spring 2023 grant recipient of $35,000.00 from 100 Women Strong. The grant allows for the allocation of funds for seizure alert devices while continuing to promote education and awareness around SUDEP (Sudden Unexplained Death in Epilepsy).

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; 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

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