Some Bunny Loves Me!

It’s been awhile since I ‘ve caught up the news about Bridget. Her day to day condition remains somewhat stable and we are blessed to share that. She has had a little cough, but we’re trying some allergy medicine seeing as spring has sprung. Bridget continues to go to school and get all the therapy and attention she deserves. Her teacher, Nancy, shared some very sweet stories this week about Bridget’s classmates. It seems Alexia and Hailey clamor to be with Bridget whether its helping her push buttons on a book or wheel her down the hall. That made my heart sing- Bridget and her buddies! We’ve had services from hospice including music therapy, massage therapy and nurse visits. It’s nice to know they are always there- we can call them 24/7.

On the medical front, Cornell has opened their screening process for the 2nd phase of Gene Therapy. This is an exciting time for the Batten community and the children. The actual trial is seeking 16 children to treat, but sadly the inclusion criteria is far more difficult for someone like Bridget. We were actually called to come out for the screening process. With time to think about it, we weighed our options and found out that on a scale of 12 points, Bridget would maybe score 2-3 (they look at mobility, eating, communication and vision). She would NOT be asked to be part of the trial based on these numbers, she is simply too far advanced in the disease. To know this is one thing, but to hear it is yet another. That day was extremely difficult for me as her mom.

Another medical piece of information is very promising- a 2nd phase trial from the company Stem Cells, Inc. was applied through the FDA. This treatment uses purified neural stem cells to provide the missing enzyme that children with NCL lack. Please read this link to learn more www.globenewswire.com/newsroom/news.html?d=189322

Dave went to the Lysosomal Storage Disorder Conference in February where he learned about what scientists are researching and what other families with foundations similar to ours are doing (raising awareness and funds for research in LINCL). In fact, some of theses families have come together with the BDSRA and formed a “Batten Family Coalition” where we are all working together for the same goal. It is very exciting to have others come together with the same intent, not only to help their child, but help others with the disease as well. We look forward to the coalition taking shape and providing help for a cure for Batten disease.

Thank you for keeping up with our story, our family. God Bless you and yours.