Starting a GoFundMe to help with our current and upcoming medical bills that have come up with Edgar’s upcoming surgery July 21, 2025.

On June 24th Edgar had a MRI ordered by his eye doctor from having continuous eye pain over the last six months. What they found on the MRI was not what we were expecting at all. He was diagnosed with Arnold Chiari Malformation Type 1. We were told he had an over abundance of brain fluid, creating swelling in his brain and that we needed to follow up with a Neurosurgeon in LA.

On July 3rd, we saw a Pediatric Neurosurgeon up in LA at Kaiser Sunset Hospital. The doctor was amazing, he went over Edgar‘s medical history, the MRI scans explaining everything and then said surgery was necessary to fix this. Edgar surgery is scheduled for July 21st up in LA.

The doctor explained how Edgar’s brain has slipped 22 mm down his spinal canal to his second vertebrae in his neck. He’s on heavy restriction till the surgery. He’ll be in ICU after surgery for a few days recovering. Once at home, he’ll be on bedrest for two weeks. He’ll sleep upright or slightly elevated for 6 weeks. He won’t be allowed to be submerged in water for 6 weeks as well. He has follow up appointments set after surgery on August 5th and September 9th both in LA.

The surgery is intense. They’ll be shaving down bone on his first 2 vertebrae in his neck and resecting part of his brain in the tonsillar cerebellum area and putting in a patch.

We have protocols set up for when to call 911 and when to go to the emergency room if things should worsen from now to surgery.

Since the diagnosis on June 24th we’ve been to the emergency room several times from him having severe pain or other issues caused by the Chiari Type 1.

Trying to explain to your toddler, Why he can’t play run and climb or play outside, ride his bike or scooter or drive his power wheel Jeep is not an easy task. It’s easier said than done.

Oddly enough this diagnosis makes so much sense, he’s been having problems for over a year which we didn’t understand what was going on. We have an amazing pediatrician who has always listened and tried to point us in the right direction. He had recommended the ophthalmologist. Edgar has speech two days a week and he has an occupational therapist who helps with his issues eating food as well as throwing up and choking.

He had balance issues often and on which have progressively gotten worse over the last few weeks.

He had a second tongue tie release surgery on June 17 before being diagnosed with Chiari type 1. Thinking it would help with eating issues. It helped with him being able to maneuver his tongue better to eat, but didn’t help with the choking or throwing up. His speech has improved since the release. His Neurosurgeon said everything is caused from the Chiari malformation. He said the writing on the wall was clear as day. He said whether Edgar was having issues or not from the scans alone warranted surgery. With Edgar being so young and still growing it’s made everything progress and get worse. We are so very thankful to have this diagnosis now rather than later. Without surgery the swelling in his neck will only grow as he grows causing more and more issues with blood flow to his brain and spine, which then could eventually cause severe breathing issues, body weakness and would start to affect his motor skills.

Edgar Strong, brave and so resilient I don’t think anything is gonna stop him from living his best life. We will learn how to deal with things as they happen. We will learn and adapt as we learn more with this diagnosis. Just as we do with every day life. We learn and we adapt. I’m so thankful his ophthalmologist scheduled the MRI and found this so we can move forward. So many things make so much more sense. We’ve had so many questions answered. I know in my heart he’s going to be ok and everything’s going to work out.

Please keep him in your thoughts and prayers. We’ve never experienced anything like this nor have we ever had to ask for help. Thank you for taking the time to read this and if you should decide to donate thank you.

Thank you

Maribeth and AJ