Cooper, Hannah’s sweet little therapy friend from Texas, is losing his battle with mitochondrial disease. What this little boy has gone through in the past year, even just in the past few months, is just excruciating. Why does there have to be so much pain with these life-limiting diseases? Why do our children have […]
[Continue reading...]Dr. Roy to the rescue!
19 Feb by
With the exception of Dr. Bernstein at the Children’s Specialty Center, I have not found one specialist in this city who is really willing to get to know Hannah, understand her disease process, and how this disease relates to their specialty. It has been horribly depressing, as we have gone through almost a dozen specialists […]
[Continue reading...]Reality vs Hope
19 Feb by
I didn’t end up going to today’s last day of the symposium. After a great sit-down chat with Dr. Goker-Alpan and a very informative lunch with our patient liaison from Genzyme (as well as some quick chats with other researchers), I just felt that I got everything I needed to get during those first two […]
[Continue reading...]World LSD Symposium, Day 1
17 Feb by
Today was the first day of the WORLD Lysosomal Storage Disease Symposium. Even though I knew the conference material would be over my head, I really went there just to meet some of the researchers and doctors that I have been talking with over the past two years since Hannah had been diagnosed as well […]
[Continue reading...]Phew….so much going on!
16 Feb by
There has been SO many big things going on around here these past few days, it is crazy! Rare Disease Awareness event at the kids’ school is becoming bigger and better than I ever could have dreamed. The enthusiasm and support from the principal and the staff has been overwhelming and exciting! On […]
[Continue reading...]Workin’ those legs!
10 Feb by
Hannah had physical therapy today. It was another day to work with the stander that we were thinking of getting for Hannah. Something to build up her muscles in her legs, knees, feet, etc. This was our third week with the yellow trial machine, and Hannah lasted about 3 or 4 minutes this time. She […]
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