To all the BA children...we need a 'run for rare'. A liver disease that has no known cause. Awareness rocks
i met noah on the side of highway 11 w just outside of mt carmel tn. today.i talked with him long enough to be really impressed.
Charlie, Samantha, and Mike are three friends I have met over the years through my personal battle with sickle cell anemia. They also shared this fight, among many other illnesses between the four of us. Unfortunately, my three friends have lost this fight at very young ages, 12, 25, & 35 respectively. I miss y'all everyday and think about you all the time and now I ask that everyone who reads this take sometime to learn a little more about sickle cell anemia and trait today. This disease effects more people than originally thought. Typically sickle cell is thought of as a Black disease. Well this just isn't true. SCD, originated in Africa, but it is also prominent in the middle eastern and Indian communities. Also, here in the USA, because we are all integrating more and more into each other's ethnic groups SCD is also presenting itself in the White population as well.
For my 5 year old son Matty who is battling Late Infantile NCL, Battens. He brings sunshine into the lives of every single person he meets and he is fighting this insidious disease until there is a cure. Thank you Noah for shining some light on Battens and increasing the awareness of this and the many other rare diseases.
id like to make a dedication for my daughter Savannah who has Kat6a and for all of our kat6a friends (only about 15 diagnosed world wide) this is a newly discovered rare disease and therefore We don't know what to expect for our kids. We just live day to day doing the best we can.
Savannah is 5 years old, she's non verbal, non mobile, she has severe developmental delay, was born with multiple birth defects including a cleft palet, multiple VSD's, malrotated intestine , hydronephrosis, microcephaly & more. You can find more about kat6a @ chloekat6a.org or search for us on Facebook, KAT6A Support Group