As we reach our teens, most of us are just beginning to enjoy the simple things in life, whether it is good grades or making new friends in middle school. But Verona native Zoey Penny may be fighting for her life.
Zoey, just a few months past her second birthday, suffers from a fatal condition called Progeria.
Progeria is a rare genetic disorder where a child is born in good physical shape, but ages abnormally fast, about 7 to 10 times faster than another child. The name ‘progeria’ comes from the Greek word ‘pro’, meaning before, and ‘geras’, meaning old age.
Progeria, also known as Hutchinson-Gilford Progeria, is caused by the mutation of a gene that makes cells unstable. Progeria is not a hereditary condition, but an occurrence by chance.
Children display symptoms at about 1 year of age. Symptoms include loss of hair or body fat, stiff skin and joints, visible veins, delayed tooth formation and a disproportionately large head. Children age fast but grow slowly and have cardiovascular problems, including hardening of the arteries, and irregular heartbeats. Motor skills, such as speech, and intellect are unaffected by the condition.
Zoey Penny was diagnosed with Progeria when she was just 6 months old. She is one of 78 children in the world with this tragic condition. There is no known cure to Progeria, and statistics say those who have it are likely to have a life span of only 13 to 20 years and to die from heart attack or stroke.
The Progeria Research Foundation’s mission is to discover a possible cure and discover treatments for Progeria, as well as to locate unidentified children with Progeria. If there is a cure for Progeria, it could possibly be used to treat heart attacks in adults, as well.
Some drugs used in cancer treatments, called farnesyltransferase inhibitors (or FTIs) are thought to correct the faults in cells for progeria. There is a drug called Rapamycin, which is believed to slow the harmful effects of Progeria, but not cure it.
Team Zoey is a fund raising organization created by Zoey’s grandparents, John and Marlene Marozzi that raises money for the Progeria Research Foundation. Team Zoey had a huge success at their First “Miles for Miracles Turkey Trot” event. The 5k run or 2-mile walk was held the Saturday after Thanksgiving in the Verona Park.
“The Turkey Trot was amazing,” said Zoey’s mother, Laura Penny. “I can’t explain how exciting and touching it was to see so many people there all for Team Zoey.”
Over 800 showed up the race and gave their time, generosity and love for the cause. There was a DJ, baked goods and ‘Team Zoey’ apparel being sold at the ‘Trot’.
The event rose over $17,000 in pledges and close to $38,000 in total. There are already plans for a second Turkey Trot next fall.
Team Zoey planned to raise $500,000 in 2011 for the Progeria Research Foundation. In the past 18 months, they raised $800,000 for their cause. All of their proceeds are donated to the Progeria Research Foundation.
According to Team Zoey’s website, http://www.teamzoey.com, other fundraisers this year included bake sales, motorcycle runs, dinners, fashion shows, spin-a-thons, swim meets, and a golf tournament. The Progeria Research Foundation also does their own fundraising to try to support future FTI treatments on children with Progeria.
“We have had tremendous support and fundraising from people since Zoey was diagnosed, some we know well, some we’ve never even met. We are so thankful and fortunate for all of it” said Mrs. Penny.
The inspirational Team Zoey and those who support them, fighting against great odds, is determined to prove there is hope for Zoey and the 78 children around the word suffering from this condition.