Help Jayson Find a Diagnosis!

It's a big week!  We meet with our geneticist again this week.  It only happens once a year, and a lot rests on this appointment.  Unfortunately, I am not holding out a lot of hope from answers right away.  Our geneticist has not been too supportive or tenacious, so I'm hoping to have a heart to heart with him at our appointment.  I recognize that half of all undiagnosed cases remain undiagnosed, but that does not mean that we, as Jayson's team, should not do everything in our power to find a diagnosis.  If this very knowledgeable geneticist does not dedicate himself to Jayson and finding answers, we will find yet another geneticist who will.

For now, I am exhausted.  We've had a rough month or so in our household.  Seizures have kicked all of our buts, Jayson isn't sleeping, and I had knee surgery.  I've been doing research for new syndromes to bring to our geneticist's attention, but I'm having a hard time finding something new that we haven't already looked into.  If only there was a way to share Jayson's picture and conditions with the world, and look for others who are like him who are diagnosed!  There is....

We are sharing Jayson's face with the world through social media.  I am very hopeful this will help me find new ideas and conditions to research and find other friends who are like Jayson, both diagnosed and undiagnosed.  So many people have been willing to help on this journey, and we are so grateful.  So please continue to share his story near and far.  Let's find a diagnosis for Jayson!

Wondering why it's so important to our family to find a diagnosis?  Read this blog post.

Read about our last genetics appointment on this blog post. and the letter from our geneticist on this blog post.