Wednesday, February 1, 2017

Rare Disease Day

February 28th is Rare Disease Day. You might be thinking, "So what?", because you have been lucky enough to not have a rare disease impact your life. Two of my cousins were diagnosed with Gangliosidosis 1, also known as GM1, at a young age. GM1 is a lysosomal storage disease that attacks the brain and spinal cord and is always fatal in children. 

Growing up, I noticed that my cousins, Kat and Morgan, weren't able to do some of the things that I could. Tasks like walking and talking were difficult. The disease got progressive with age, ultimately causing them to not be able to function without assistance. Now, they must be fed and bathed; taken care of like a newborn. 

Through all of this, my aunt, uncle, and cousin (sister to Kat and Morgan) have remained so strong and loving. Some people give up, some send their kids away, but they have done their best at giving their girls the best life they can have, everyday, and remaining positive through it all. 

Photo By: Jenene Hanlon
With the photo above, my aunt posted:
"You want a drink so you lean over to the table, pick up the glass and take a sip, you have an itch so you scratch it, you want to talk so you open your mouth and speak, you want to stand so you do and stretch, you want to leave the room so you walk out the door, you want a big cuddle so you walk to your mom and put your arms around her ..... all these things are so easy and simple ...... now take a minute and imagine your body doesn't work, you cannot move, you cannot speak, you cannot eat, you cannot scratch that itch, you depend on others for such simple things, you are trapped, ... every minute of every day ... imagine ... my child is at war with her body every day ... my child is my hero ..."

Here is the link to a video that explains their story

This month, I will be wearing a jean bracelet to represent finding a cure for this terrible disease. These girls haven't had the opportunities that so many of us get every day. I support this cause because I support my family. If you find it in your heart to do the same, I would love to show you where bracelets can be purchased. 
"Together, we can make a difference." -Jenene Hanlon

1 comment:

  1. I think this story is amazing. It really touched my heart to watch the video of their story. I have known people who have had a disease, such as cancer, that has taken over their body. I know how hard it is to watch this change happen. The most important thing to do is remain there for them. They are still the same person. They are still themselves, unique and beautiful. I loved reading this story because often times we get so caught up in ourselves. This really made me think how lucky I am to be alive and be able to do the things that I am capable of doing. We are blessed to be able to do the thing we do, so I think it is amazing to take time to step back and realize there is more out there than the small world we often are caught up in. Thank you for sharing their story and stay strong!