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.