Support Isaac's Journey Through Hydrocephalus

Hi everyone. This is Ryan and Sarah Wright writing on this page that we created.

If you are reading this link, you probably know our son, Isaac, and his battle with hydrocephalus over the years (and all of the problems and conditions that result from hydrocephalus, and that cause us to be in the hospital at Children's as much as we have been recently in the summer of 2024). But for those of you that don't, below is the basic story.

Isaac was born prematurely in 2021 and had brain damage of some indeterminate amount at birth, and also some brain damage during a terrible post-shunt-installation infection that he had in the fall of 2021. Since that time, he has had shunt revisions, fenestrations (where they remove cyst material in his brain to free up space for fluid to flow), and more recently, seizures. Up until the summer of 2024 he hasn't had too many hospital stays (mostly for shunt revisions), but as of this summer he has started having seizures. (Study and diagnosis currently underway. Could be a one-off thing, could be an ongoing problem. We'll soon be instructed on a rescue plan in the event that he seizures in the future).

There is a financial cost that comes with each of these hospital visits that is not associated with his medical bills. (he is on Medicaid waiver approval, so the vast majority of his medical bills are covered under that plan). But due to the distance between Omaha to Lincoln, the fact that we only have one car, and that I have to work from a private home office with internet or a private coworking space in Omaha with internet, and that Sarah will start teaching soon, there are unexpected costs we have to incur each time Isaac's body suddenly presents with an issue that requires hospitalization. For those of you that don't know, there does not exist pediatric NEUROSURGERY, specifically, in Lincoln. In Nebraska, you can only get access to pediatric neurosurgery at Children's in Omaha. (Although there is pediatric NEUROLOGY in Lincoln, there is no pediatric NUEROSURGERY there.)

We have created this page in order to give people who know Isaac, love Isaac, and have been impacted by his story, a way to contribute to the offsetting of these costs.