Monday, January 30, 2012

Rare Isn't So Rare After All

Before Audrey was born, I was a teacher at a high school with a high population of students with special needs. I remember sitting in on one of the moderate to severe special ed classes, taking notes for a paper I had to write. I left feeling proud to be part of a school that valued students like them, while also concluding that my only experience with this population would be as a teacher. Yes, I was one of those people who thought, "That will never happen to me or my kids..." It's not like I longed for my kids to be all-stars or Prom Queen or Valedictorian. I just wanted them to have a healthy, normal life.

Fast forward a few years...

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1 in 100,000 was the statistic given to us when Marcus was diagnosed at 4 months old. Even the neurologist who gave us the diagnosis had to look up Joubert Syndrome because she had never come across it before. To be the only ones in our circle to have a child with a syndrome and on top of that, to be faced with a very rare one, made us feel dreadfully alone.

I've come across some new statistics recently.

- An estimated 350 million people are affected by rare disease worldwide.
- 1 in 10 Americans is affected by a rare disease. That's over 30 million people, which is greater than the total amount of people living worldwide with cancer.
- There are more than 7000 rare diseases with some of them affecting less than 100 people.
- 75% of rare diseases affect children.
- Almost 80% of rare diseases are genetic in origin.
- These conditions are chronic, life-threatening, and fatal. There are no cures for these diseases and only 5% of them have any type of treatment.
- Over 50% of rare diseases have no foundation, advocacy group, or community support.

The loneliness we felt after Marcus' diagnosis has diminished after realizing that the world we thought was caving in, was actually a new world that was opening up to us. Perhaps it was the world that Jesus saw...the one full of people who were sick and lowly.

I'm thankful that Joubert Syndrome has opened our eyes to the fact that millions of people are affected with sickness, pain, and loss. Because of Marcus, we've "met" and heard about the most courageous people from all over the world who are caring for loved ones, have buried loved ones, and who are also experiencing for themselves the immense challenges of disease. It's really the Prom Queen who lives rest of her life pain-free forever after that is the true rarity.

I'm writing this post to bring attention to World Rare Disease Day on February 29th, which is 30 days from now. The number 30 is significant because 30% of children with rare disease will die by their 5th birthday. And for many of these children and parents, there is very little support. If you know Marcus and have followed a bit of our journey, you know how thankful we are for the support we've received. To think there are families going through far greater challenges with little to no community (and medical) support weighs heavily on my heart.

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Please help raise awareness for rare disease by visiting the Global Genes Project Facebook site. Their goal is to unite 1 million supporters and spread the word for rare disease. If you want to learn more, please visit the R.A.R.E Project site. To read more personal posts and how rare disease has affected others like Marcus, read along on the Blog-Hop by clicking on the blogs below this post.

Thank you, dear readers, for loving Marcus, loving our family, and for taking up issues like these that are close to our heart.

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8 comments:

Kim said...

I am all over it Sue. While I certainly do not suffer a rare disease (or maybe I do and don't know it) I do know what it's like to be a part of a small percentage of people with illness, that there is no cure for. Marcus (and your family) owns a special piece of my heart, because no matter how different our situations are, we both know what it feels like to be different from unable else, to be unable to do things that other people in our age group and gender can. Rights of passage are just a fairytale dream for some. Just think, after all of the years of working with Mikey, it was mostly Marcus, your sweet son whom I have never met, who brought us closer together. God works in wonderful ways.

Kim said...

I am all over it Sue. While I certainly do not suffer a rare disease (or maybe I do and don't know it) I do know what it's like to be a part of a small percentage of people with illness, that there is no cure for. Marcus (and your family) owns a special piece of my heart, because no matter how different our situations are, we both know what it feels like to be different from unable else, to be unable to do things that other people in our age group and gender can. Rights of passage are just a fairytale dream for some. Just think, after all of the years of working with Mikey, it was mostly Marcus, your sweet son whom I have never met, who brought us closer together. God works in wonderful ways.

mindy m. said...

I love this post! I love that you, like me, choose to see the good in among all of the bad. The support, the community, is so very important and while we would never choose these diseases and disorders for our kids, once we realize what we are dealing with, we surround ourselves with as much light as possible. I am so glad that you have a community of support and thank you for sharing your story here today. I had never heard of this disorder until your blog and I am off to learn more about it from the world wide web.

Have a great day!

Mindy (a fellow blog-hopper and rare disease Mama)

www.mooneyequalsmc2.com

Liz said...

Great blog post! Love how you have chosen to celebrate the good and not dwell on the native of chronic rare illness.

Best of luck to you and your son on the journey ahead.

Shasta @ intheoldroad said...

Great post. I love your positive outlook. I'm also the mother of a child with a rare disease and participating in today's blog hop. So nice to 'meet' you :)

Shasta
http://intheoldroad.blogspot.com/2012/01/my-other-lifea-rare-story.html

Cathy D. Lee said...

Love how you said, that this opened y'all to a world that Jesus saw - the sick and lowly.

Thanks for sharing - it's encouraging.

Gabriela Asigurari Locuinta said...

To be able to go on further it's a blessing.I wish that all the people that have problems in their lives can find that blessing an never stop going further,just like you have.

kang said...

love you suey :) Love this post

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