Since the beginning of my sitch I have been inspired by a friend whose son, Jonah was diagnosed with a very rare disease called Sanfilippo Syndrome. This disease is horrible. Currently her son Jonah is 4 and has some small learning difficulties but as he grows he will develop more difficulties. Eventually he will no longer be able to walk or feed himself. He will die before he is an adult.
The disease has no treatment and very little research has been done to find a cure because it is so rare. Unlike erectile dysfunction drug companies will not profit from finding a cure for this horrendous disease.
Jonahs mother is truly an inspiration, she has started a foundation and is determine to find the means to pay for research and eventually find a cure. She acknowledges that in reality a cure might not come in time to save her son but that doesn’t stop her from working for a miracle.
Today Jonah plays with other 4 yr olds and was at my daughters birthday party but eventually he will be mentally & physically disabled. His mothers positive outlook, courage and her fight for her son is amazing and inspiring.
Please take a minute and vote for her organization on the alt. Chase communitity giving is giving grants to small charities such as hers and she is trying to win the grand prize of 250,000.
Search on alt for chase community giving Allow the app Vote for Jonahs Just Begun
You can also google her org Jonahs Just Begun to learn all the details of this terrible illness.
Thanks guys. I have been really working hard to promote her cause and its really helping with my own healing and getting out of my own head.
---- M 39 H 35 D5,D4 M 4 T 9 ILYBNILWY 5/18/11 Left 7/11/11 Divorced 12/1/13
