I was going through my videos of Hannah on youtube, and I came across the last 4 videos I uploaded. They are videos that I made during Hannah’s last few weeks when she was having episodes. We took video of them so we could show her hospice doctor and nurse to help better manage […]
[Continue reading...]What to do from here
7 Mar by
I’m finding it harder and harder to come up with things to talk about in my blog. For over 3 years, my focus was on fighting to give Hannah the best quality of life. Hundreds of hours researching and searching out people to help me understand Gaucher’s disease and what was on the horizon for […]
[Continue reading...]Little Miss Hannah’s Legacy Brings Awareness to Rare Disease
5 Mar by
written by Mina Frannea, Today’s Mama Each year on Rare Disease Day, participants from around the world advocate for those who are affected by rare diseases, bringing attention to the need for improved access to treatment and for higher standards in diagnosis and care of patients. The observance of Rare Disease Day falls on the last day of […]
[Continue reading...]You can rest now, Olivia
4 Mar by
Hannah passed away three months ago today. Woke up this morning to a text that Olivia, one of Hannah’s soul-sisters with Gaucher’s type 2, passed away. She had just turned 3 years old a couple of days ago. Today was to be her birthday party, a huge celebration for such a sweet little girl. […]
[Continue reading...]In search of my missing piece
1 Mar by
I saw this news piece tonight about a teenager who passed away. The mom of this girl (who has two other kids) made a comment that just hit me to my core… “I’m just trying to find a new normal without having the missing piece of our 5-piece puzzle.” That is EXACTLY how I feel. I’m […]
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