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.
No related posts.
Related posts brought to you by Yet Another Related Posts Plugin.
