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I always seems to begin these updates with an apology for not writing / updating sooner.;) We have been so busy with Avalanna & treatments & life that I forget... so I am sorry.

Let me begin by thanking you all for your continued prayers for Avalanna. I knew that these prayers are helping keep our sweet girl comfortable & happy.

Avalanna has had a fun few months & we continue to live life to its fullest daily. Last month we started a new medicine - Aurora A Kinaese inhibitor. Avalanna is tolerating it well but we still don't know if this medicine will stop the disease progression. We can only hope & pray that this experimental inhibitor will be the miracle we have been looking for.

I beg you to keep praying - specifically to St. Charbel. He is a Lebanese Saint to whom many Miracle in kids have been attributed. We need a Miracle for our Avalanna.

With deepest gratitude & Continued Hope,
Aileen xo