Who’s Phelan Lucky?
Well, Elena Delle Donne, Henry “The Fonz” Winkler and even “Bachelor” star Juan Pablo for starters. These and dozens of other bold-faced names count themselves fortunate to be supporting a Delaware-inspired fundraising campaign for a rare disease by donning a t-shirt with a distinctly Irish logo.
“Phelan Lucky” selfies are popping up all over the internet, and each time one of these t-shirts is sold it benefits research aiming to help the 1400 children and adults around the world who are diagnosed with a rare chromosomal abnormality known as Phelan-McDermid Syndrome (PMS).
One young man afflicted with the disease is Jack Randolph of Wilmington, and his parents created the awareness and fundraising campaign that has gone global.
When Jack was diagnosed at 14 months with PMS, his parents Jennifer and Eric Randolph were feeling anything but lucky. In fact, the news was one of those life-altering moments. “For like three years we were in a fog. It was such a feeling of being alone. The doctors told us our son had this awful syndrome, but we didn’t know what to do,” said Jennifer.
Jack was a very happy baby who loved interacting with people and only showed very small differences from other infants. In fact, doctors at first did not seem to think that the slight physical variations were anything to worry about.
But as Jack grew older, he began to miss certain milestones, like walking at 12 months and talking. Today, 14-year-old Jack is still nonverbal, has an awkward gait, a cranial cyst, and a high risk of developing neurofibromatosis (tumors).
But he thrives with the routine of going to school every day McKean High School, as part of the Meadowood program, which serves students with moderate to severe disabilities.
“Jack’s the sweetest kid in the world. He’s super gentle, and we just love him so much,” Jennifer told us. “But when Jack doesn’t feel well, if something hurts – if his shoes are too tight – we have no idea. We struggle with things like that every day, all day.”
Phelan-McDermid is a rare genetic syndrome caused by a deletion or mutation on the q arm of chromosome 22. Individuals with PMS are often diagnosed with autism or autism spectrum disorders. They also frequently have severe cognitive delays, are nonverbal and have a propensity of seizures and sleep disorders, in addition to many other behavioral and medical issues.
Jen and Eric learned about the Phelan-McDermid Syndrome Foundation in 2010, when Jack was 8-years-old. “When we were introduced to the Foundation, things started looking up. There was finally a way for us to focus our efforts toward something positive for Jack,” remarked Jennifer.
Other celebrities who have donned the four-leaf clover t-shirt include former all-pro quarterback and Superbowl champion Phil Simms, LPGA golfer Ani Gulugian, comedian Bobcat Goldthwait, former Eagles football player Vince Papale, Team Hoyt, and Delaware politicians Sen. Chris Coons and Gov. Jack Markell.
Inspiration for their fundraiser came from a unique Wilmington tradition. The Randolphs always enjoyed taking part in the annual St. Patrick’s Day Loop, Delaware’s largest shamrock celebration. So Jen came up with the catchy phrase “Phelan Lucky” and created t-shirts that could be sold online and worn on the Irish holiday. With the help of friends who help spread the word, they market a new t-shirt design every year. And they’re always on the celebrity lookout.
The campaign, which originated in 2014, has succeeded in raising almost $80,000 and has sold shirts in every one of the 50 United States and numerous other countries, including Argentina, Australia, Brazil, Canada, Cancun, China, Germany, Greece, Ireland, Italy, Malaysia, Monaco, New Zealand, Peru, Spain, the United Kingdom and others.
“With the power of social media, we reached families in all fifty states and so many countries around the world, and we have encouraged them to sell t-shirts to raise funds,” said Jen. “It’s really cool and uplifting!”
The Randolphs hope that Delawareans will support them and share their story!
To take part in the 2017 campaign, visit www.booster.com/phelanlucky2017 to purchase your shirt and/or donate. Money raised goes directly to PMSF for research, family support and awareness. Once you receive your shirt, join the Randolphs and many others in Trolley Square for the Out & About St. Patrick’s Day Loop to help raise awareness while celebrating St. Patrick’s Day.