Hi everyone,

We wanted to share an important update on Maya.

Maya’s health has taken a difficult turn. She began experiencing involuntary full-body movements, and after further evaluation, she was diagnosed with dystonia (involuntary, sustained muscle contractions). These movements became worse and additional testing, including an EEG, revealed seizure activity, and she has since been diagnosed with infantile spasms (a rare form of epilepsy). These seizures have been extremely challenging to control in the hospital.

A recent MRI of her brain also showed new tumor growth, meaning the oral chemotherapy that had previously been considered effective is no longer working. Maya’s care team has now recommended a more aggressive dual chemotherapy regimen, which she will receive weekly. Maya had a port placed on Friday and began this new treatment on Monday, April 20th. While we are hopeful, we have also been warned about the seriousness of the potential side effects and know the road ahead will be difficult.

Because of Maya’s increasing medical needs, Anna has not been able to return to work as a registered nurse, and Jesse continues to be the sole provider for their family during this incredibly demanding time.

We are so grateful for the love, prayers, and support that have been shown to Maya and their family. Every message, share, and donation continues to make a meaningful difference as they face these new challenges