Eliza’s 9 Month Miracle 5K Fun Run and Walk at Lake Carolina
Eliza O’Neill, daughter of Glenn and Cara O’Neill, has been diagnosed with a rare genetic disease called Sanfilippo Syndrome, Type A. Children with this disorder are missing an enzyme essential in breaking down certain sugar molecules. This causes severe and progressive brain damage, hearing loss, and damage to other body organs. These grave health consequences result in a life expectancy in the early teens, sometimes less. A child will lose the capacity for speech, walking, swallowing, and ultimately the loss of vital organ functions.
There are research teams who have made significant breakthroughs in Sanfilippo Syndrome research, including a gene therapy that has cured the disease in animal models. This breakthrough treatment will stop the disease, and can have far reaching implications for other MPS disorders, as well as other neurological conditions. However, the O’Neills need to raise $2.5 million dollars to complete the trial and to treat Eliza, and others like her. The reason this needs to be done in 9 months is so that Eliza will still be in the early stages of this disease for trial qualification. The O’Neill’s are watching a ticking clock in their child while they are trying to enjoy every moment with Eliza and slow down time.
Pontiac Elementary staff got together to brainstorm ideas about how we could help to raise funds for Eliza and her quest for this life saving treatment. The idea of hosting a 5K race in the Columbia community was generated, and after five months of planning and organizing, we proudly ran Eliza’s 9 Month Miracle 5K Fun Run and Walk at Lake Carolina on a chilly Saturday morning, March 1st. Over 200 people came out to support and raise money for this precious Pontiac Elementary student. In one day, between race registrations, sponsorships, raffles, fishtail bracelets, Eliza koozies, and straight donations, the 5K was able bring in $8,935 which was directly donated to Eliza!
While there have been many fundraisers, galas, and benefits held in Eliza’s honor to help raise the necessary funds for this treatment, the family still needs your help. Please visit www.curesff.org to learn more and donate to this cause.
