Zebras Like Ella is my safe place for thoughst and emotions relating to rare diseases. It is where I plan to relate the story of Ella and her brave fight and open up the eyes of the world on PVNH, EDS, EMD and maybe even thousands of other rare diseases that my and Ella's friends are confronted to, every day.
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Zebras Like Ella | zebraslikeella.blogspot.com Reviews
https://zebraslikeella.blogspot.com
Zebras Like Ella is my safe place for thoughst and emotions relating to rare diseases. It is where I plan to relate the story of Ella and her brave fight and open up the eyes of the world on PVNH, EDS, EMD and maybe even thousands of other rare diseases that my and Ella's friends are confronted to, every day.
zebraslikeella.blogspot.com
Zebras Like Ella: February 2010
http://zebraslikeella.blogspot.com/2010_02_01_archive.html
Thursday, February 25, 2010. All The Way to Belfast. Some of you might have heard. Or maybe even read. That my little girl. My vivacious, precious, little darling. Will be in Northern Ireland. In Belfast, more specifically. Yes, I know. Is really on February 28th. But who celebrates at City Hall? On a Sunday of all days? So, all the way overseas. Will part of a day. This Friday at noon. And seek better screening. But how can this be? I hear you ask. Becomes part of the brotherhood. We all become related.
Zebras Like Ella: All The Way to Belfast
http://zebraslikeella.blogspot.com/2010/02/all-way-to-belfast.html
Thursday, February 25, 2010. All The Way to Belfast. Some of you might have heard. Or maybe even read. That my little girl. My vivacious, precious, little darling. Will be in Northern Ireland. In Belfast, more specifically. Yes, I know. Is really on February 28th. But who celebrates at City Hall? On a Sunday of all days? So, all the way overseas. Will part of a day. This Friday at noon. And seek better screening. But how can this be? I hear you ask. Becomes part of the brotherhood. We all become related.
Zebras Like Ella: The Faces Are Adding Up
http://zebraslikeella.blogspot.com/2010/02/faces-are-adding-up.html
Wednesday, February 24, 2010. The Faces Are Adding Up. Who knew that my little angel. Would drive me forward. And give me the strength. The strength to ge up. Every day without her near me. The strength to breathe. Such a simple act. Almost everyone takes for granted. The strength to journal her journey. The strength to reach out to others. Some who like me. Lost a piece of themselves. The same disease she did. Afflicted by rare diseases. All around the world. I started my day today. And with that note.
Zebras Like Ella: Ella’s Story - Belfast Rare Disease Day 2012 (text and video link)
http://zebraslikeella.blogspot.com/2012/02/ellas-story.html
Tuesday, February 28, 2012. Ella’s Story - Belfast Rare Disease Day 2012 (text and video link). Feet up. Dancing to the beat of her own drums :). Here is Ella’s story. Ella’s breathing, even on 24/7 oxygen therapy, was still very problematic. She appeared to be de-saturating suddenly, and returning to the hospital, we found out she would dip as low as the 40s and 30s, when the norm is the 90s. Ella hamming it up under her mask. A few days after Ella died, I created ELLA – Everyone Loves Little Ange...
Zebras Like Ella: Prelude to Other Faces of PVNH
http://zebraslikeella.blogspot.com/2010/11/prelude-to-other-faces-of-pvnh.html
Tuesday, February 23, 2010. Prelude to Other Faces of PVNH. Since I learned of the diagnosis last October. My mind has been in overdrive. Overdrive to the 100th power actually. It already had been in my ongoing research. Since that one disease had been mentioned. When Ella was hospitalized for the second time. And so I went on. Reading every paper I could find. Posting testimonials on web sites. Researching late at night. Contacting rare organizations around the world. Really brought me comfort. When it ...
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Blogs | Unite. Educate. Advocate. Find A Cure.
http://pvnhsupport.com/blogs
Unite Educate. Advocate. Find A Cure. The international neuronal heterotopia disorders community. World PVNH Day August 7, 2016. 2015 – 4th edition. Ella's Disease: PVNH4. Yolaine, Ella’s Mom. Joanna, Jonathan’s Mom. About PVNH Support & Awareness. Alliances & Resources. PVNH Around the World. Video of Ella’s Story. About Ella’s Mom. Dealing with Medical Professionals. 2015 PVNH Congress Presenter Registration. Ella & Mom in the Media: Interviews and more. World PVNH Day 2016 – Press Release.
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Zebras Like Ella
Tuesday, February 28, 2012. Ella’s Story - Belfast Rare Disease Day 2012 (text and video link). Feet up. Dancing to the beat of her own drums :). Here is Ella’s story. Ella’s breathing, even on 24/7 oxygen therapy, was still very problematic. She appeared to be de-saturating suddenly, and returning to the hospital, we found out she would dip as low as the 40s and 30s, when the norm is the 90s. Ella hamming it up under her mask. A few days after Ella died, I created ELLA – Everyone Loves Little Ange...
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