If a parent is willing to try to save their child’s life, why the B.S.?
February 13, 2009 by Carrie
Filed under Rare Disease, Vents and Frustrations
As many of you know, I’m come to know and deeply care about Addi and Cassi Hempel, as I have talked to their mom on the phone on a number of occasions. She, as an advocate mom, is what I aspire to be for Hannah. They have Niemann Pick type C, and their mom is fighting so hard to save her daughter’s lives.
Take a moment to read her latest post, as it just pisses me off to no end why people aren’t willing to be more compassionate and willing to help a stranger save their child’s life!
Greyson’s Gift – Texas Newborn Screening Law Changes
February 9, 2009 by Carrie
Filed under Rare Disease
I met this family online a few weeks before her beautiful little boy, Greyson, passed away from Krabbe’s disease. Her situation not only makes me sad because her Greyson passed away before his first birthday, but it also makes me mad because his death could have been prevented, as Krabbe’s disease is treatable if caught early enough. Many states test for Krabbe’s disease in their newborn screening group, but for whatever lame reason, Texas does not. She wants to advocate change for all children born here in Texas, and I will do whatever it takes to help her make Grey’s Gift a reality.
Be at Peace, Cora McClenahan
February 9, 2009 by Carrie
Filed under Rare Disease
I have been following Cora’s family blog since her neuroblastoma (cancer) diagnosis a two short weeks ago. When I read their blog tonight and found out that she had passed, I just lost it. I remember seeing Cora’s pictures from the past couple of months, and there are so many of the same pictures that I have with Hannah, same pose, same smile, same love in her eyes.
My heart is breaking for her family, and I had a mini-freak out because that could be us.
Please keep her family in your thoughts – http://themcclenahans.blogspot.com
Special Kids: Elizabeth
February 3, 2009 by Carrie
Filed under Rare Disease
Elizabeth born on September 29, 2003 and diagnosed with Spinal Muscular Atrophy (SMA) Type 1 when she was 8 months old. Her family lives in Pontiac, Illinois. She is a smart, beautiful child a very special child. She participated in a clinical trial at Stanford under the direction of Dr. Ching Wang .
She an inspiration to children like her all over the world.
She sees a very good SMA doctor in Madison, WI,. Dr. Mary Schroth. She uses the NIV protocol that helps keep Elizabeth’s lungs healthy and the best doctor there is for these kids in her grandmother’s opinion.
SMA is a genetic disease in which many physical abilities, such as sitting independently, crawling, swallowing, and even breathing are affected. The brain and mental abilities are NOT affected; in fact many people with SMA have above average intelligence.
More info about SMA and Elizabeth – www.our-sma-angels.com/elizabeth
World Rare Disease Day – February 28th
February 3, 2009 by Carrie
Filed under Rare Disease
World Rare Disease Day is being held Feb. 28, 2009. Join the fight to raise awareness and educate people on genes and how they impact health! Millions of people worldwide are impacted by rare diseases of different types — together they make rare disease not really rare.
Please share this video on your blogs, among your friends, and wherever you can.
More Special Kids
February 2, 2009 by Carrie
Filed under Rare Disease
My blogroll for active blogs for children with rare diseases and other life-threatening medical conditions is slowly growing. I’ve removed the direct links from the bottom left sidebar, and I have created a separate page listed at the top “More Special Kids.” Please keep sending your links and help spread the word.
If you have the time, please visit each of these families and send them your good thoughts for their kids. I know as a parent dealing with this that comments, even just the “thinking of you” comments, mean so much during these unique times.
Need a little help with a project…
February 1, 2009 by Carrie
Filed under Bloggin' Mama, Rare Disease
I need your help. Yes, you. Whether you are a regular visitor or just happened to visit my site for the first time, I need you.
I’m on a mission to find and compile all blogs and up-to-date websites of children with rare diseases (or adults who were diagnosed as children). There are over 6000 rare diseases affecting children in the world, and I can’t do this by myself. I’ve been looking, and I’ve only found less than a dozen blogs (see my special kids links on my sidebar), and I know there are more parents like me out there.
Basically, I want to create a directory/blogroll (or whatever you want to call it) that links all these special children together to be unveiled on February 28th, the 2nd annual World Rare Disease Day. You can either leave them in the comments below or send me an email.
If you have a blog, please post this request and help me out. You can even have your visitors email/post the links on your site and you can email them to me. I’m not looking for more traffic with this project.
And if you use StumbleUpon, Digg, Facebook, etc. please click below to share this request!
