We're partnering with The Mighty!

We're thrilled to announce a new partnership with The Mighty, a website focused on improving the lives of people facing disease, disorder, mental illness and disability by sharing their stories.

We will now have our own home page on The Mighty and will be connected to the stories our families submit to be posted.

With this partnership, we'll be able to help even more people!
Here's an example of the kind of stories on The Mighty: 8 Things I Wish I Knew When My Child Was Diagnosed With a Rare Disorder

We encourage you to submit a story to The Mighty and make your voice heard.


Being in the moment

Three years into her journey with HIE, one mother took a moment to reflect on how far her family has come.

 

Jen Greenway gave birth to her baby girl and immediately started on the roller coaster of HIE.

 

Jenessa Hope was not breathing, and had to be resuscitated. Her parent watched helplessly as doctors worked to help their baby girl and then tearfully said goodbye as she was sent to the NICU at another hospital.

 

“We honestly had no clue what had happened, just didn't understand how this could be,” Jen said.

 

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Never give up

“When you think you’re at the end of your rope, tie a knot and hold on.”

It’s a quote that one HIE mom wants to share with other families on their HIE journey.

Hope is never giving up, Jessica Mizel said.

 

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Be Fearless

By Melissa Waller Longshore

 

It was field day and all the children were going down the Slip and Slide, including the special needs classroom.

The only child not going down the Slip and Slide was my child. He was at the bottom watching everyone slide. In the corner of my eye, I saw him and I saw the look in his eye.

It was a wistful look. It was a look of “if only.” If only, I could do that, go down that slide, today.

 

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Shifting hope

For Julie Keon, hope was initially most intense in the early years of her daughter’s life.

Since then, her hope has shifted, but that doesn’t mean she is hopeless, Julie said.

“I have learned that hope is most intense in the early years but as life presents itself and you begin to settle in to how things will be. It doesn’t mean that I have become hopeless. It’s just that my hopes have changed and evolved,” she said.

 

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