When Jaxon was just over a year old, we noticed subtle jerking movements in him that didn’t seem normal. After some initial testing, he was diagnosed with an extremely rare brain condition called Hemimegalencephaly, causing infantile spasms and myoclonic seizures. Hemimegalencephaly is where one hemisphere of the brain is abnormally larger than the other and is associated with seizures and wide-ranging developmental delays. Because this is a structural condition of the brain, the seizures typically do not respond well to medications as they might with other epileptic conditions.
Ever since Jaxon’s diagnosis, he’s endured countless tests, long hospital stays, rounds of harsh medications and battling through side effects. He’s spent his time in OT, PT, and speech therapy working to help him strengthen his mind and body, learn how to chew, swallow, use his hands, crawl and eventually walk.
The only long term treatment is a very invasive brain surgery called a hemispherotomy, disconnecting the malformed side (right) from the good side (left.) The hope with the surgery is to stop his seizures happening on the right side from effecting his good side on the left.
His long term development is unknown, but this website is meant to keep family and friends informed on his long journey.
Thank you for the updates, he is a wonder! So strong, so capable and I know his progress will be swift with his supportive family by his side! Lots of love and resilience being sent your way. 🥰