Our sweet boy Ian was recently diagnosed with GM1 Gangliosidosis, a rare and fatal genetic disorder that progressively destroys nerve cells in the brain and spinal cord. Mutations in the GLB1 gene cause GM1 Gangliosidosis. This gene provides special instructions for making a vital enzyme which plays a critical role in the brain. Without this enzyme, fatty substances accumulate to toxic levels in many tissues and organs, particularly the brain. This disorder is robbing children of their abilities, development, and their chance to live a normal life.
We are on the brink of finding a sure cure but we need your help to expedite the wait we will have to endure while money is being raised & trials are being tested. We cannot waste any more time waiting, this is a progressive disorder that generally gets worse over time. Many parents have lost their children to this, I cannot stress how REAL this is. We will not let this happen anymore! Let's get together and do what we can to bring the cure closer to our reach so that these little angels can progress and enjoy their lives. Every bit helps!!!