Jonah's Just Begun

Hello, my blog friends!  One of my friends from high school, Jill Wood Weishaar, is trying to raise awareness about the rare genetic disease that her darling little boy, Jonah, is suffering from and will eventually die of if a cure is not found.  

 

 

It's called Sanfilippo Syndrome, and you can read all about the disease and how it is affecting Jonah at the website Jill started for her cherished son:  Jonah'sJustBegun.org.  Since it is such a rare disease it is not a high-profile health condition...which means that most medical researchers are not focusing on finding a cure for it.  The only hope for these children and their families is to hire private medical researchers to work towards finding a cure so that Jonah and hundreds of other beautiful children do not slowly degenerate to the point of incapacitation and eventual death.   

 

I've copied some photos of Jonah and the beginning few paragraphs of text from Jonah's website.  Please click on the link above to go to Jonah's site and find out what you may be able to do to help out.  Even just linking it to your blogs and places like Facebook is a great way to help, because the more awareness the disease gets, the more likely it is that researchers will focus on finding a cure for it.  If you're in a position to help out financially, that would be great too.  Thanks in advance for helping out in any way you can.  I'm going to be posting some handmade items on my blog here pretty soon to sell as a benefit for Jonah, so stay tuned about that.  In the meantime, here's Jonah's story:

 

This is Jonah. He’s turning two and loves Elmo, throwing his ball in the park, stacking blocks, and patting dogs. And he is slowly dying.

At his one-year-checkup, Jonah's doctor observed that his head circumference was “off the charts,” and suggested an MRI. Jonah was diagnosed with Sanfilippo Syndrome, Type C. He 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. There is currently no cure for Sanfilippo Syndrome.

Right now, Jonah is in good health. He still has a chance to fight this fate, if we can promote awareness and research of his disease and raise money to help find a cure. Please, help us to help Jonah. He deserves a chance at life.

 

Comments

[Sarah Cresap]

Shelley, we are close to a child in Memphis who has this disease. He is almost 8 years old. He has lost all his speech (probably by the time he was 4) and is starting to have a hard time walking. It is really heartbreaking. He's never been potty trained. But what a shining spirit he has. I will send the link to his mother. It is likely his parents could give birth to another child with this disease so they are considering selective invitro for another child.