Adventure for Ava

Helping families with special needs Adventure.


the goal

  • Take a family that is dealing with a special needs child out on an adventure.

  • To take a break, experience something different and create lasting memories.

  • Produce a short film that tells their story and documents their adventure.

  • Take pictures of the family on their adventure for them to cherish.

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If you’d like volunteer a service or adventure please fill out the form below.

 

how it started

The best memories we’ve made as a family were those outside.

Before Ava turned one you would normally find us in the mountains. It’s where we had the best time, just us outside. Our facebook feed would usually be pictures or videos of use somewhere just enjoying the outdoors.

At her one year checkup our doctors discovered something was wrong.

She wasn’t hitting her development milestones and her gross motor skills had peaked and began to decline. At the time the diagnosis was Cerebral palsy. We were in the hospital routinely for PT, OT and testing. At 18 months during an eye exam something was spotted, a DNA test confirmed it.

She was diagnosed with a fatal genetic disease called Tay-Sachs.

Today at 2yo Ava suffers from seizures, blindness and paralysis. She requires round the clock care, because of this we hardly leave the house. No longer able to easily go hiking, camping or adventuring together. We now find ourselves on the other side of things. The ability to regularly go outside and adventure together is now a thing of the past.

Every family should have the opportunity to get outside and adventure.

Everyday can present new challenges with children that have special needs. For parents their life can become the same routine of hospital visits, therapy, and constant care, leaving little time for anything else.

Your most vivid memories shouldn’t be those in the hospital.


The Tay-Sachs Annual Family Conference