We are the Blake family, Ken, Brittany, Harrison and Greyson. On December 10, 2021, our family received the devastating news that our son Harrison had been diagnosed with a rare genetic condition, GM1 Gangliosidosis.
GM1 Gangliosidosis is an autosomal, recessive, aggressive, always fatal disease in which the body does not produce adequate enzymes to break down specific molecules. Instead, these molecules collect on the brain and spinal cord, leading to widespread neurodegeneration. The list of complications that Harrison is up against is horrifying, and we are already witnessing this disease progress. We are in a race against time and don't have much time to wait.
However, a breakthrough is just around the corner! Currently, a few active clinical trials are searching for a treatment and, hopefully, a cure to this devastating disease. Earlier this year, we attempted to have Harrison participate in one of the clinical trials taking place. This took our family on a 2 week journey to Toronto Canada, however, during the initial assessments, it was determined that Harrison's disease had progressed too much, and he ended up, despite all of our efforts, not being accepted into the trial.
The initial results are very exciting and promising from the trials, and because of this, our family is now starting our journey to get Harrison treatment
As you can imagine, the costs associated with accessing treatment are astronomical. Some associated costs are assembling a team, lawyer fees, drug/treatment creation, safety/efficacy studies, dosing, and much more. All funds raised will go towards the costs of procuring treatment for Harrison.
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We appreciate any and all support, and are thankful for everything our community has done, and continues to do for us.
Sending all our LOVE!