Friday is #RareDiseaseDay, and I’m raising my voice for those who are often unheard. My four-year-old nephew, Beckett, is living with Acute Necrotizing Encephalopathy (ANE) – a rare and life-altering condition that affects the brain.

ANE causes severe damage to the brain, often triggered by a viral infection. It’s extremely rare, and the road to diagnosis and treatment can be long and overwhelming for families. But my nephew is fighting every single day, and I’m determined to raise awareness and share his story with the world.

A month ago, Beckett experienced his second episode of ANE, resulting in the loss of many common functions we often take for granted. For the past few weeks, he has been under the loving care of Lurie Children's Hospital of Chicago. On Tuesday he was transferred to Shirley Ryan AbilityLab where he is undertaking daily rehabilitation measures for his road to recovery.

Beckett and his parents, who haven't left his side, are so thankful for the good graces they enjoy. They all look forward to the day where they can rejoin Beckett's older sister, Mila, as one family together at home.

Here’s how you can help:

• Spread the Word: Share this post to help others learn about ANE. For those who want to follow Beckett’s story you can follow his journey on Instagram 🐝
• Get Involved: Share your own #ANEAwareness stories or experiences with rare diseases.
• Donate: Your donation to Lurie Children's Hospital can help fund critical research for children like Beckett.

Why it matters: Lurie's special care helps fight rare diseases like ANE that often get overlooked. The more we talk about rare diseases like ANE, the more people can get the care they need and deserve. There’s hope, but I need your help to spread awareness and fund the research and care that can make a difference.

To help support the cause I will be matching all donations up to $5,000. The Locasto Family Foundation is matching an additional $25,000.

Together, we can make sure no one faces this fight alone.

Thank you so much for your support.

#LurieChildrensHospital #ANEAwareness #RareDiseaseDay #BeckettsBeeHive 🐝