Take a step with Rodrigo born of desperation as parents to make known our history, rather the nightmare we are living since last June 17 diagnosed our son Rodrigo of 5 years old with a rare disease called Sandhoff disease.
Family and friends united in the fight decided to form an association called Stop-Sandhoff. The purpose of this is to fund research for a cure for this devastating disease and raise funds for possible treatment, we will do all this through events, donations and collected plastic plugs which is already underway.
For you to understand a little better, the monster facing us is called GM2 gangliosidosis or Sandhoff disease is genetic inheritance ca and affects the central nervous system. There is an absence of an essential enzyme for causing irreversible damage to the cells resulting in progressive neurological disorders. Children will gradually deteriorated rando, losing their ability to walk, eat and communicate.
Children affected by these diseases have no hope unless we raise funds to help advance the investigations that are already geared towards gene therapy. In Spain not investigated so that all our hopes are pinned on Professor Cox and his team at the University of Cambridge in the UK.
I ask spread for this disease is known and especially to educate the world of rare diseases not because you have to stop researching and investing in their treatment and ultimate cure. Because if a cure is found for this would also mean a cure for over 70 lysosomal storage diseases, as well as other neuro- logical conditions such as Parkinson’s, Alzheimer’s and multiple sclerosis.
You can follow our story through Facebook Take a step with Rodrigo and Twitter Take a step with me.
To assist our cause you can join our group of teaming in www.teaming.net/daunpasoconrodrigo.
SOLIDARITY ACCOUNT ES48 2100 0207 5302 0039 3713 (LA CAIXA)
“While there is life there is hope, never surrender.” Many thanks
