This is Jonah. Jonah was very recently diagnosed just a few months ago, with an insidious disease, Sanfilippo Syndrome, Type C. There is no cure.
From the Jonah's Just Begun website, "Jonah lacks a crucial enzyme to break down a toxic material that is now accumulating in his body. In time, this buildup will result in any number of injuries to his body: mental retardation, bone deformation, organ and tissue damage, followed by death."
However, Jonah's parents are working feverishly to change that prognosis with their foundation, Jonah's Just Begun.
How you can help:
1) Donate to the Foundation, Jonah's Just Begun. They need funding for an important study.
2) "Like" their foundation on facebook,
3) Take photos of your children writing "Jonah's Just Begun.org" in chalk on the sidewalk and upload it to their facebook site
4) If you know someone with Sanfilipo get in touch with the Foundation, they are looking for participants for the study and
5) If you are a medical professional, learn as much as you can about this rare disease that often goes misdiagnosed for years.
For more information on Jonah and his Foundation, Jonah's Just Begun, please visit here. You can also watch a segment on Good Morning America here. Please donate. Please help find a cure. Jonah deserves a chance at life.
Photo copyright Megan Joplin, 2010, all rights reserved, may only be used with written permission from Megan Joplin.
Wednesday, October 6, 2010