The last day of February has been designated as World “Rare Disease Day” to call attention to the public health issues associated with rare diseases. The Project Charity — The Children’s Rare Disease Network has compiled some facts and figures about rare disease that we thought would be of interest. If you have other facts […]
[Continue reading...]Overdue Thank-You’s…
27 Feb by
This post has been a long time coming, but as I watch Hannah sitting here playing with her toy and smiling, I know now is a good time to do it. There are so many people I want to thank (I feel like I’m giving an awards speech) for their emotional support, financial support, and […]
[Continue reading...]Guess who is sitting!!
27 Feb by
She has finally figured out how to sit by herself! She has been able to do this for a few minutes at a time now. This is so awesome!!! She’s figuring out how to compensate with her enlarged abdomen and torticollis (you’ll notice the right head tilt). Best of all, she is ON TRACK for […]
[Continue reading...]Guess who is sitting!!
27 Feb by
She has finally figured out how to sit by herself! She has been able to do this for a few minutes at a time now. This is so awesome!!! She’s figuring out how to compensate with her enlarged abdomen and torticollis (you’ll notice the right head tilt). Best of all, she is ON TRACK for […]
[Continue reading...]Lots of Questions, Lots of Answers
27 Feb by
I can’t believe Hannah’s video has been online for less than 48 hours, and it has already been viewed almost 1000 times. That is phenomenal! Thank you so much to those of you who have forwarded and shared our story. I have been overwhelmed with emails and facebook messages during the past two days, and […]
[Continue reading...]Hannah’s official awareness video
25 Feb by
This really was the hardest thing for me to do since we knew Hannah was sick. At first it felt like I kept stabbing myself in the heart intentionally, but after a while, I just became numb to it. Once it was done, and I saw the final version on youtube, I just lost it. […]
[Continue reading...]
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