Something is weighing heavily on my heart lately and I need
to express it. It will not please some of you, but this is the raw me—like it
or not! You know when you are in high school and there are those clicky groups…that
you are excluded from if you don’t fit the bill? Well, I feel like I’m part of that group
lately….and trying to expand it to others that are in the same boat, but not
exactly alike! I feel like that “group” is starting to exclude me because I’m
not loyal to them alone.
Rare diseases to me are just that----rare, and many people
haven’t heard of them. If I say ugly words like cancer, CP or MS most people know what I mean. What if I say just as ugly words like Alpers
Syndrome, Krabbe, MLD, AGS, Leukodystrophy and Mitochondrial disease….would you
know what I was talking about?
Would you want to support a 2 year old child suffering
from Alpers more than a 2 year old suffering from MLD? Life threatening
diseases are real and devastating. If you lose a child from cancer or leukodystrophy...the
devastation is the same. It’s a nightmare and heart wrenching—something most
people will never and should never understand.
Would you focus your attention on research and support for
one rare group or all the children fighting yucky, rare life threatening
diseases? Would you raise money in one child’s memory or all the children gone
to soon? Most don't know--but many mitochondrial diseases, leukodystrophys, autism and behavior disorders are intertwined.My beautiful son Ryder passed away 8-22-12, 2 weeks shy of his 3rd birthday from Alpers Syndrome. I LOVE AND MISS HIM beyond your comprehension. My Mom opened a special funds account in Ry’s name: The Ryder Hauer Fund for Rare Childhood Disorders. This fund supports Dr. Narayanan and TGen 100% on their quest to help children with ANY rare childhood disorder. My heart expands to children with mitochondrial disease, leukodystrophy, cancer, blood disorders…..on and on—EVERY CHILD deserves a lifetime no matter what “label” they are given. I wish all families going through the heartache of watching their child suffer—a supportive community, peace of mind and much love to surround them in their most trying times.
I am here to help any family experiencing a loss, unknown diagnosis, life-threatening diagnosis or just someone to lean on! Life is hard, but with God and each other we will get through this.
I like this sissy! Although our family has learned a lot in the past few years about things we never imagined, I often think how many other conditions, disorders, diseases, etc. we are unaware of. You're right! It doesn't matter who has what, or what has who. It's all a road no-one should have to take. And if someone finds them-self on that road, I too wish they find peace of mind, support and the comfort they will need.
ReplyDeleteI Love that Jen-- "It doesn't matter who has what, or what has who." Sounds like Dr. Suess :)
ReplyDelete