A family affair

She was dia­gnosed with epi­lepsy at the age of 11, but these days, Ri­ley Stone is help­ing oth­er chil­dren in need through her char­ity, Funds for Fam­il­ies.

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

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