Help Marcus Fight His Rare Disorder

I'm reaching out to share the story of my best friend Mariah and her family, who are going through something no parent ever expects. Her sweet little boy, Marcus, has been facing a heartbreaking and complex medical journey that has turned their lives upside down.

Marcus has always been a bright, happy, and easy-going child who hit every developmental milestone on time, often ahead of schedule. But earlier this year, Mariah and her husband, Nick began noticing some troubling changes: Marcus started to regress developmentally, physically, and with his speech, eventually becoming nonverbal.

At first, they thought it might be a hearing issue and saw several ENTs, but his hearing was perfectly fine. It wasn’t until Mariah shared a concerning video with their pediatrician that they were urgently referred to a neurologist. That led to a visit to the ER and a four-day hospital stay, where doctors discovered that Marcus was having abnormal brain activity consistent with seizures. He was prescribed medication, but the side effects were so severe, he couldn’t stay on it. He has since been on 3 medicine changes. All to which are not working.

Since then, things have gotten more difficult. Marcus’s seizures became more frequent and intense, leading to another hospitalization. It was during this second stay that genetic testing was finally done and the results revealed something incredibly rare: Marcus has a condition called GRIN2A. It’s a rare genetic disorder with no cure, known to cause seizures, epilepsy, developmental delays, and other challenges too long to list. It's also extremely resistant to seizure medications, making treatment even more complicated.

This diagnosis has changed everything. Because GRIN2A is so rare, many doctors aren’t familiar with it. Mariah and her family have had to search far and wide for specialists, including upcoming travels out of state to CO and PA. All while juggling the emotional and financial toll of caring for a child with such complex needs.

Mariah and Nick would never ask for help on their own. They are strong, humble, and incredibly devoted to their kids. But as her best friend, I’m asking on her behalf. Marcus is fighting an uphill battle, and they need support whether it’s to help cover medical expenses, travel costs, or just to remind them that they’re not alone in this.

If you’re able to donate, know that every dollar will go directly toward Marcus’s care. Please also consider sharing their story on your on social media pages.

Thank you so much for reading. Mariah, her family, and especially Marcus are beyond grateful for your kindness and support during this incredibly difficult time.