A special day

Maybe today’s date is significant for you - a birthday or an anniversary.

For many of us, today is just another day. 

But for a certain special group of people - today’s date - February 28th - marks a day to spread the word about a kind of suffering many of us don’t experience. 

Today is World Rare Disease Day.  For those suffering from a rare disease, today is a day to talk about rare illnesses and how they affect a person and their family - a misdiagnosis, delays in finding the true problem and potentially the inability to receive treatment - rendering their condition fatal.

I won’t pretend I knew of World Rare Disease Day before this last week.  The person who gets the credit for enlightening me - Carrie Ostrea.  Carrie is a mother of three.  Her youngest, 7 month old Hannah, suffers from an incredibly rare disease - Gaucher’s Disease - Type 2 or Type 3. Her condition is often painful and is believed to be terminal.

But this news has not stopped Carrie, her husband, Robert, or either of their older children - Ethan and Abby from believing in miracles or fighting for a cure.

This is Hannah’s brief story.

You can visit Hannah’s website to learn more. 

I asked Carrie how people could help.  Of course monetary donations are helpful in the search for a cure, but, to Carrie - one of the most important things you and I can do is to simply spread the word about rare diseases.  While so many suffer from different symptoms, much of their experience is the same - the waiting for a diagnosis, the fight for a cure, the lack of available resources.

I would love it if you passed this story around - to give Hannah’s family and those like them a little bit of the hope they could truly use.

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