Parkwood resident Riley Stone seems like any other 12-year-old girl. She enjoys participating in school and neighborhood plays, playing sports and singing — which she does at the Immaculate Mary Nursing Home.
But three elements separate Riley from her peers, two of which are her battles with an inborn heart condition and a seizure disorder. The third and perhaps most defining factor that makes Riley stand out is the fund-raiser she started for families much like her own, who struggle economically and emotionally as their children spend much of their young lives in hospital beds rather than on the playground or in the classroom.
Until age 11, Riley showed no signs of any ailments or disorders, but that all changed on an autumn afternoon.
On Nov. 27, 2009, Riley was in the Parkwood Youth Organization gym, playing basketball with her friends, when she collapsed. Her mom was outside, assisting a soccer tournament as a volunteer.
“Her soccer coach came to get me, telling me that something happened to Riley in the gym,” said Colleen Stone. “When I got to her I was told she had a seizure and she was unresponsive. With that she was rushed to Aria Health and then transferred by a St. Christopher (Hospital) medical team to St. Christopher’s, where she stayed ‘status’ (a seizure typically lasting longer than 30 minutes) and woke up on Sunday.”
Dr. Nandini Madam, a cardiologist, diagnosed Riley’s condition as long QT Syndrome (LQTS), a condition that causes an abnormality of the heart’s electrical system. The youngster was prescribed a beta blocker and had a loop recorder inserted near her heart to monitor her heart rate.
At the time, the seizure remained a mystery and the Stones were unsure if it would happen again. There is no known direct link between LQTS and seizures.
From December 2009 to June 2010, all was quiet with Riley; she completed fifth grade at MAST Community Charter School and began her summer. But while swimming with friends, she left the pool because of leg numbness — and had another seizure.
Again, Riley’s seizure was in “status” for two days, but this time she was diagnosed with epilepsy. The seizures persisted until October, after three failed medication attempts. Finally, Riley was prescribed an effective medication and her seizures started to calm.
ldquo;The first seizure she had, in November 2009, went untreated because seizures are not normally treated if only one occurs,” said Stone. “Since she’s had more, she is now diagnosed with epilepsy.”
From June to October last year, Riley had five hospitalizations, each spanning multiple days, and four in-patient rehabilitation stays. Those sessions reconditioned her physical and cognitive skills.
“One of Riley’s favorite hobbies is to ice skate,” said Stone, “but as a result of everything that happened she was just so unconditioned and could no longer do it. After the rehab, she was able to ice skate again without holding on to me. It was just a really big milestone for us to see her do that.”
When Riley returned home after her final hospital stay last October, the people she’d met in the hospitals and in rehab remained fresh in her mind. She wanted to help the families of those living in and out of hospitals.
“Riley woke up one day and said, ‘Mom, I feel so blessed that I’m not in the hospital anymore, but I know there are a lot of kids still in the hospital. I want to start my own charity … what do you think I could do?’” explained Stone. “A lot of the kids Riley met had entered the hospital or rehab before she did, and were still there when she left. And a lot of them were just like her — one day changed their entire lives.”
Riley’s 16-year-old brother, Joe, was in the middle of soccer and basketball seasons when Colleen got the idea to sell candy bars at his games, and Funds for Families was born. Although Riley sold the candy bars for $1, people were extra generous, and she made more money than expected.
“When people saw that the money went to charity, they would walk up and give five dollars and take just one or sometimes no candy bars,” said Riley’s mother. “I really liked the idea, too, because nobody can prepare for a medical crisis and the financial situation that long-term care causes. Parents are forced to leave their jobs, and you can’t get unemployment because of a sick child. It’s really tough.”
Riley and her mom decided they’d use the proceeds to purchase debit cards from a bank and contacted the Ronald McDonald House, an organization that serves as a home away from home for families as their children undergo long-term care in local hospitals. Through the Ronald McDonald House at St. Christopher’s, the Stones were advised by social worker Tara Duffy to distribute $25 cards to patients of Riley’s choosing.
“At the time when we delivered the first batch of cards, Tara told us she had a family that was there for ninety-nine days, so we thought they would be the first family to get cards,” said Colleen Stone. “Some families may get one card, some families may get four.”
The convenience of the debit card has helped many families in a variety of ways. For example, the cards can be used as gas cards by parents who drive back and forth from work or home to the hospital, or to enable parents to take their other children to the movies, or even to buy necessities.
“I’ve certainly never seen a 12-year-old do anything so big and truly helping to others,” said Duffy, the social worker. “Riley wants to help in any way she can. She’s not specific in where the money goes. She gets the debit cards to help any aspect of the families.”
Since January, Riley has donated $1,400 directly to the Ronald McDonald House. Her card donations have included four cards given to a family she met while in rehab — their child is still receiving therapy — and four more cards given to a boy from her church who was severely injured in a car accident.
In addition to selling candy bars, Riley makes key chains in the shape of people by using wax string and beads, a skill she learned from a lunch monitor at her school. Selling them for $3 apiece, Riley has made everything from Phillies players to firefighters and animals.
“My brother is a firefighter so he sells them at work, my mother sells them at her job to senior citizens, and we’ve sold soccer-mom ones at the Parkwood Youth Organization,” said Colleen Stone.
Riley also conducts a coin drop outside of Sam’s Club. Last Thursday she sponsored one that raised $400 — good for 16 more cards.
“Primarily, all of the money Riley makes goes to the Ronald McDonald House, but if we hear of a family in need in the community who we know is going to be in a long-term hospitalization, then we tend to them as well,” said Stone.
The Stones were once on the receiving end of charity. During Riley’s long ordeal, her family received gift baskets and contributions from countless sources, including the Sgt. Patrick McDonald Fund, Northeast Peanut League, Northeast Girls Interclub Basketball League, Lighthouse Soccer Club, Liberty Bell Youth Club, Torresdale Boys Club, Parents of Roman Catholic, Philadelphia Soccer Club, and the Calvary and St. Martha cheerleaders, among others.
“A lot of the contributions came from a benefit that was held in November at the Parkwood Youth Organization. Our sports competition and people we don’t even know contributed,” said Stone. “In a time of crisis, everybody came together. I can’t even list everybody who helped out.”
At the benefit, a resident won a 50/50 raffle for $700 — and donated the money directly back to the Stones.
“I was in tears when I heard what he did,” said Rob Stone, Riley’s father.
“We as a family were truly overwhelmed by the outpouring of support from family, friends, community, strangers and all the churches and people that prayed for Riley,” said Colleen Stone. “I think she was on every prayer list in Philadelphia. We saw firsthand the power of prayer. Riley had many pastors and priests come to the hospital and pray over her, and many people sent blessed metals.”
There is no end in sight for Funds for Families, judging by the number of ways Riley tries to bring in money. Although she still copes with her own ailments, she is focused on helping others.
“All this time she could have been asking ‘Why me?’” said Rob Stone, “but instead she’s helping others.” ••
Reporter Dave Nescio can be reached at Dave.Nescio@gmail.com