Hi, my name is Adriana, and I’m Victor’s mom.
This is not something we ever imagined ourselves writing. It’s not easy to ask for help, especially right after the holidays, but we’re at a point where pride has to take a back seat to safety.
Victor is a beautiful, resilient little boy who has been described by his medical team as a “head scratcher.” He has many puzzle pieces that don’t yet fit into one clear diagnosis: epilepsy, global developmental delay, hypotonia, non-verbal status, inability to walk, difficulty eating and maintaining weight, ophthalmological issues, and ongoing GI problems. Despite countless tests and specialists, we still don’t have one answer that ties everything together.
What we do know is that Victor’s seizures are silent and dangerous.
His seizures often happen while he is asleep. There is no jerking or obvious movement that would wake us. Recently, he’s had seizures that may have lasted close to an hour, possibly longer, simply because we were asleep and unaware. By the time he was found, precious time had already passed. With every seizure, there is a risk of SUDEP (Sudden Unexpected Death in Epilepsy). Because of that, timing is always critical. The sooner a seizure is caught and treated, the safer Victor is. Sleeping through one could have devastating consequences.
That is a terrifying reality for any parent.
We are seeking assistance to obtain a SAMI seizure monitoring and alert system, which provides real-time motion detection and alerts when seizure activity begins. This system would allow for faster response, timely administration of rescue medication, and improved seizure management for him at home. Unfortunately, the full monitoring kit is a little over $1,500 with taxes and shipping. That’s just not something we can afford on our own on top of ongoing medical expenses.
This monitor isn’t a luxury, it’s peace of mind. It’s the ability to catch seizures sooner, shorten their duration, and protect Victor from further harm. It’s knowing we’re not sleeping through something that could change his and our lives forever.
Asking for help is hard for us. But we cannot do this alone.
Any contribution, no matter the amount, will go directly toward improving Victor’s safety and quality of care. If you’re able to donate, share, or even just say a prayer for our sweet boy, we are endlessly grateful. Truly. Every single dollar matters. A dollar. A penny. Even just love and a prayer sent our way.
Thank you for helping us keep Victor safe. ❤️