Just was in the mood to share some recent pictures of my amazing, sweet, charming, and always smiling little girl. You would never know that she has a fatal rare disease that is threatening to take her away from us in a year or few…
[Continue reading...]Denial? Reality? What do I say to strangers?
16 May by
It is almost like I have been in denial about this disease for so long. I mean, I knew she had it, obviously. But after looking at all the symptoms that she is developing all at once, it really got me very down and pretty depressed today. Especially now that there is this probability of […]
[Continue reading...]Putting all the symptoms together
15 May by
Hannah had her monthly checkup with Dr. B., her pediatrician. I realized after this visit that more and more symptoms are starting to come to the surface now… * Lack of blinking. I have no clue how long Hannah has had this issue, but we were only made aware of it by someone noticing in […]
[Continue reading...]National Institute of Health visit almost set!
15 May by
We have a date for our NIH visit to meet Dr. Ellen Sidransky and her team, including Dr. Ozlem Goker-Alpan. July 13th through July 18th. We’d have to leave Monday evening since Hannah has her Cerezyme treatment at TCH that morning, and we USUALLY get out of there by 1:00 PM, but after last week’s […]
[Continue reading...]Physical Therapy, SureStep, and Supramalleolar Orthosis
14 May by
We started physical therapy at TCH yesterday. During her assessment last week, she was found to have “scattered skills,” meaning that her skills ranged from the 4-month level to the 8-month level. She has incredible upper boddy chest strength but incredibly poor abdominal and trunk strength, which is what is possibly causing most of her […]
[Continue reading...]10-year-study solidifies strong link between Gaucher’s Disease and Parkinson’s Disease
13 May by
Today is an INCREDIBLE day in the world of Gaucher’s Disease! Two very important studies came out in the past day or two that have not only proven the strong link between Parkinson’s Disease and Gaucher’s Disease, but they will also open the eyes of many Parkinson researchers and biopharmaceuticals towards Gaucher’s Disease! Is GD23 […]
[Continue reading...]
Latest Comments