.2015 Joubert Syndrome Conference.

One of the craziest things about Joubert Syndrome is how rare it is. With less than 1,000 cases diagnosed world wide, it can be an isolating road we are on. Through social media we have had the opportunity to connect with other families who know exactly what we are going through.

No explaining. No justifying. No judging.

They understand.

And with all those families being spread around the world, we have had very few opportunities to meet other JS families. We were blessed to meet the Ender family while we were at the National Institutes of Health in Washington DC for testing on Parker. They have two children with JS and are about 10 years further down the road in this journey. It was so encouraging to us to see how they are living their lives, how well their kids are doing, and to hear words of encouragement to us as we were just beginning ours.

We also had the opportunity to meet the Lee family when we were in Southern California on vacation. We went over to their house for dinner and just hung out. It was like a safe haven as we were able to talk with them and they were able to completely relate. They are a few years further down the road from us so they were able to give advice, encouragement, and offer a lifelong friendship. We had only ever met through facebook messages, but walking into their home, we felt like we had known them forever.

Most of the time I am the one who is processing through the boys' diagnosis and grieving through it all and Nick is there to offer encouragement and support. But that night when we were driving back after visiting with the Lee's, Nick said with tears in his eyes...

"That was the first time since the boys were diagnosed that I have felt NORMAL."

And that hit me like a ton of bricks. It was a moment I will never forget.

Our meetings with these families have been divine appointments and such a blessing and encouragement to us. It's hard to put into words what it is like to feel "normal" and to be around families who are going through the same thing we are.

Every 2 years, the Joubert Syndrome and Related Disorders Foundation puts on a conference. The conference is 4 days and includes seminars with doctors, specialists, and experts. There are sessions for siblings, grandparents, parents, etc. that address so many of the trials and daily struggles that come with Joubert Syndrome.

It is also a time for us to just BE. To be surrounded by other families who understand. To feel normal and accepted. To build relationships with these other amazing people and children.

The 2015 Conference is going to be held in Chicago, Illinois from July 22-25th. We have never had the opportunity to attend a conference and are really hoping to be able to make this happen next summer. In order to make this happen we are going to need to raise the funds to get there. Throughout the next 4 months we will be doing some fundraising to help our family get to our Joubert Syndrome family!

Below is a link to our gofundme page. If you feel inclined to donate we would be so blessed by your donation and support.

http://www.gofundme.com/dietzenfamJSconf

Thanks so much for following our journey and for always offering kind words of encouragement and support :)