Matthew is a seven year old boy residing in Richton Park, Illinois with his parents, his four year old brother (who has been diagnosed with epilepsy as well), and his one year old sister. Matthew had his first seizure at age three; he was then diagnosed with ESES epilepsy and Lennox-Gastaut syndrome. Doctors continued to seek answers for years; this process included several hospital admissions, EEGs, MRIs, blood work, different anti-epileptic drug compounds, etc. At six years old, Matthew started to lose the ability to eat and drink, followed by losing the ability to talk, walk unassisted, use his hands, and so forth. After several additional tests, he was misdiagnosed with status encephalopathy.
In July 20...17, Matthew’s family was encouraged to seek a second opinion by their local epileptologist who believed Matthew needed more advanced testing. Over the course of the last eight months, Matthew’s family has made several 20-hour commutes to Boston Children’s Hospital. During their most recent trip to Boston, Matthew was formally diagnosed with a very rare and extremely aggressive neurodegenerative disease. This disease is attacking his brain, taking away his ability to talk, eat, speak, walk, think...in essence, it is currently robbing Matthew of his childhood and will eventually claim his life. THERE IS NO CURE for this disease.
This benefit, Moving Mountains for Matthew, seeks to raise funds to offset the travel and medical expenses; as no one knows how quickly this disease will progress, Matthew’s family wishes to spend as much time with him as possible. We would deeply appreciate your support and would love to see you at the upcoming benefit! Thank you so much; every single moment is truly precious and