Moments of Grace

I cant even begin to express the past 3 or 4 weeks. It has been such a roller coaster ride. Today I feel so blessed for all that has transpired the past weeks and days.
This is Talans (mom). My husband and I found out there was a bill being put in front of Legislation here in Utah about 4 weeks ago. We were asked to go and testify if we could. The bill is called HB94. It is a bill that can help those that are deemed Terminally Ill. It would provide them with "The Right to Try" non FDA drugs that could help them. The bill has now passed the Senate floor and on its way to make history in Utah! We cant thank those that were pushing for it and behind it.
Ive also had the opportunity to join the Utah Rare, it a group of crazy mothers trying to raise awareness of Rare Diseases. I have made some great new friends that know exactly what its like to have someone RARE! Our feelings of frustration and hope are all the same. I now have a support group. YAY!!! We are doing great things, and trying to help bring awareness through media and public to bring in a Rare and Undiagnosed diseases program to the University of Utah and Primary Childrens hospitals.
Im so excited to be a part of it. In the progress of being a part of it, the Utah Rare asked us to do an interview with KSL channel 5 and share our story of Talan. We were excited to get his story out there to help those that are having similar situations. But we were also nervous to do it. Talan is not one for attention, and doesnt want to be known for his disease. We have went down memory lane with doing the interview with KSL and also a few newspapers as we were testifying for the HB94 bill. It has brought so many emotions I cant even begin to tell you about them. Talan has struggled with some deep inner emotions as well as us. This is going to hopefully help so many other people and thats the way we are looking at it.
I will post more after the day at the Capitol today for Rare Disease Day awareness and tomorrow for the Symposium at the U of U. So much more  to share with you all. I have been so busy helping with it all that I havent had time to update his blog.
We are in high hopes for genetic testing after this weekend and more help from Doctors. I hope and pray for anyone that is affected like Talan and our family that you may find the help you are searching for. LETS MAKE THIS PROGRAM FOR UNDIAGNOSED DISEASES AT THE U OF U A REALITY!!!!
Much love to you all! Thank you for your continued thoughts and prayers in our behalf.
Jen