Support Madelyn & Family

Update 3/4/25:

Most of you have heard of Madelyn’s passing last week. I wanted to update this campaign to be transparent about funds that are being donated. The family is currently needing to use the donations to pay for funeral expenses. The support is greatly appreciated during this time.

—J. Palermo

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Madelyn’s family needs our support!!!

Madelyn has CLN1 Batten Disease, which is a rare, neurodegenerative disease that causes severe symptoms. Madelyn is unable to walk or even sit up on her own. She suffers from seizures, cannot eat by mouth, and experiences frequent respiratory infections. Madelyn has had a long journey battling this disease, frequently spending weeks to months at a time in the PICU. These hospitalizations are often separated by only a month or two at home before she is admitted again.

She is currently in the PICU again, and is struggling.

This GoFundMe campaign has been set up to alleviate her family of some of the financial burdens they are facing. With Madelyn’s many recent hospitalizations, her family has not been able to work and access caregiving funds. They’ve shared that they need support with paying their mortgage, buying food, and paying bills.

Any help and support you can provide would be greatly appreciated as Madelyn’s family navigates this very difficult time.