Stories

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Stories
One Family’s Journey with Rett Syndrome

Life for the Heimburger family doesn’t look the way they imagined. But it also doesn’t look quite as different as they once thought it would.…

Finding Your Community, Your Source of Support

We hear from a father whose child was diagnosed with a rare disorder that had little research. This is his family’s journey finding support.   

Audrey

Audrey goes to weekly therapy appointments and now we are doing full remote schooling for her. It hasn’t been easy being out of routine.

June Jessee Memorial Foundation – Virtual Programming

The June Jessee Memorial Foundation (JJMF) is a nonprofit organization that provides relief and support to help children with devastating medically complex, neurological conditions and…

Reuben

Reuben has been an adventure from the get-go! He was likely having seizures before birth, but within the first few days of his birth shortly…

May

May

Our daughter May suffered what seemed like a small fall at the age of 5 months, she was rushed to the hospital after she threw…

Lucas

“When we found out Lucas received a grant from the Child Neurology Foundation, it was almost as if it was an answered prayer.  Lucas finally…

Luke

Luke really needed the social interaction, and since we started two weeks ago, the light is coming back into his eyes.

Mia

Mia

Mia is 3 years old and has a rare form of epilepsy, SCN8A, that causes developmental delays and other problems as well.

Lucas

He has a smile that lights up a room, he loves people, and he’s also a typical rowdy boy. 

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