Run Across Alabama

My mother's co-worker has a child with Tay-Sachs disease. His story is heartbreaking.

The parents are determined to enjoy the time that they have left with their son and are raising money for Tay-Sachs disease research and awareness by running across Alabama.

From their blog:

What and When?

Starting on July 1st at the Georgia Border near Cloudland,GA and Mentone,AL , the run will travel west across Alabama through Fort Payne, Guntersville, Hartselle, Moulton, Russellville, and on July 4th will finish at the Mississippi State line near Red Bay,Alabama. Runners will complete about 50 miles a day for three days followed by 29 miles on the 4th day for a total of 183 miles.

Why?

Elliott was diagnosed with infantile Tay Sachs disease at 9 months old. Although he will never walk, let alone run, one of his favorite pastimes is riding in the jog stroller during his dad's weekend runs. Fresh air, sunshine, and a nice breeze is heaven to him and his dad. One of the lessons Elliott has taught us is to enjoy and live for today and embrace what we have and what we can do. Our hope is that by completing the run across alabama, we will help raise awareness of Tay Sachs and raise money for NTSAD as well as inspire others to dream big.


From NTSAD.org:
A baby with Tay-Sachs disease appears normal at birth and seems to develop normally until about 6 months of age. The first signs of Tay-Sachs disease can vary and are evident at different ages in affected children. Initially, development slows, there is a loss of peripheral vision, and the child exhibits an abnormal startle response. By about 2 years of age, most children experience recurrent seizures and diminishing mental function. The infant gradually regresses, losing skills one by one, and is eventually unable to crawl, turn over, sit, or reach out. Other symptoms include increasing loss of coordination, progressive inability to swallow and breathing difficulties. Eventually, the child becomes blind, mentally retarded, paralyzed, and non-responsive to his or her environment.

To date, there is no cure or effective treatment for Tay-Sachs disease.

Even with the best of care, all children with classic Tay-Sachs disease die early in childhood, usually by the age of 5, although some do live longer.

Tay Sachs is caused by a defect in the HEXA gene on the 15th chromosome. The defect occurs in 1 in 250 in the general population. The gene is recessive so both parents must be carriers and then there is a 25% chance that offspring will contract the disease.