Is It Time We Paid More Attention to Rare Diseases http://www.time.com/time/health/article/0,8599,2012177,00.html By FRANCES PERRAUDIN When Hannah Ostrea was five months old, she was diagnosed with Gaucher’s disease, a genetic condition in which the body lacks the enzyme needed to break down a fatty waste product called glucocerebroside, leaving it toaccumulate in the body’s organs. The […]
[Continue reading...]I have a dream
20 Aug by
With Ethan and Abigail having fun in California and Hannah at home with her nurse today, Daddy and I took some much-needed quiet time together and went out for lunch. It has been very rare that we get to spend time, just the two of us, these days. During lunch, we fantasized about what […]
[Continue reading...]Recovery and Progress
19 Aug by
About 10 days or so ago, Early Intervention came out to do their assessment of Hannah. Though they didn’t use the same test that our service coordinator used in Texas, it was similar and showed the same results. Hannah’s skills are still “scattered,” and she ‘rates’ between 8 months to 12 months old in […]
[Continue reading...]ER Visit and Tracheitis
14 Aug by
So we ended up back in the ER today. It all began last night when Hannah was sounded really junky in her trach. On a normal day, we maybe suction her about 4 or 5 times in a 24-hour period (she is great at coughing out what is in her trachea). Last night, […]
[Continue reading...]Creating Hope Act 2010 Bill Would Extend Priority Review Voucher System To Rare Pediatric Diseases
9 Aug by
** By Chris Hempel Great news for the pediatric rare disease community came out late last week — rare disease advocates please get this out on your blogs! Senators Sam Brownback (R-KS), Sherrod Brown (D-OH), and Al Franken (D-MN) are supporting the bipartisan bill S. 3697, the “Creating Hope Act of 2010.” Nancy Goodman, Executive Director […]
[Continue reading...]Getting into a rhythm…(yeah, right!)
6 Aug by
Sure, it sounds good, doesn’t it? Maybe if I say it enough, “we are getting into a rhythm,” that maybe we will eventually get there… Hannah is doing really well. I would say she is about 75% back to where she was pre-hospitalization. Well, if you separate the desire and ability to play […]
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