Sunday, January 4, 2015

Thank you and Happy New Year

Hi Everyone,
It is hard to believe that 2014 has drawn to a close.  As you know, 2014 was an insane year for our family.
I'd first like to thank each and every one of you for your endearing love and support.  The response has been truly humbling from our friends, family and acquaintances (both old, new and somewhere in between).  Thank you for the prayers, spreading our initial message which was shared with thousands of people in 50+ countries, the simple hugs and hellos for Maya as she walked to class each morning, and the thousands that were raised for the 5th Season Battens Research Fund... thank you, thank you, thank you.
So this is where we stand.  About six weeks ago, we started Maya on a regiment of off label drugs.  This regiment was discovered 2 years ago by a researcher at Rush University with funding from Noah's Hope (one of the family foundations that raised money as part of the 5th Season fundraiser). Unfortunately, the discovery was not potent enough for kids with Late Infantile Batten disease, but it appears to be good enough to help stabilize Maya.  Initial lab results look positive and we have seen positive changes in Maya.  This is not a cure, and it requires a significant amount of additional research before it can possibly benefit children with Late Infantile Batten disease. However, it is a start and selfishly we are cautiously optimistic that Maya is stabilized and we will not continue to see the dramatic decline that we witnessed this past summer and fall. 
As we move forward, our hope is to have additional lab results confirming that the progression of Maya's disease has halted.  We are also broadening our research to find innovative ways to restore function to the damaged parts of her brain.  Maya's walking is still very unstable and a common cold or late evening can have a dramatic impact on her ability to maintain her balance.
We will continue to work with Noah's Hope, the researcher at Rush University and Maya's medical team.  We have learned so much in such a short period of time and our hope is to expand what we have learned so as to help those impacted by traditional Late Infantile Batten Disease.  I also hope that anyone who may eventually be  diagnosed with SCAR 7 will find us and we will be able to quickly introduce them to the regiment that appears to benefit Maya.  Maya's medical team is in the process of writing and publishing papers about her SCAR 7 diagnosis and the apparent benefits of this treatment. Finally, we are working with parents and researchers within other rare disease communities to share our story and hopefully provide some positive benefit from our efforts to help Maya.
The insane thing about this journey is that we have met so many families that are dealing with Rare Diseases.  There are so many parents who are leading the charge and who are not accepting the proverbial "There is nothing more that I can do." or "You are doing everything that is possible".  These parents are knocking down barriers and finding hope where none exists.  As you cross paths with these Rare disease families, please continue to lend them your support.
Thank you again for your love and support.  
Beau and Suzette.

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