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41 °F Forecast | Road Cams Saturday, November 27, 2004 Today's News | Classifieds | Autos | Homes | Jobs | Tempo | Health | Community | Home Delivery SECTIONS Home Page Local News Sports Business Obituaries Life Opinion - Politics Tempo AP News Weather Classified Archives Site Map SPECIAL SECTIONS Since We Asked Outdoor Journal Menu Guide How To Guide Wellness Connection Readers' Choice Real Estate Showcase Joy Magazine Homelife Magazine Wedding Guide Passport to the Rogue Valley EXTRA Newspaper in Education Personals Movie Times TV Times E The People MARKETPLACE Find a Car Find a Home Find a Job Classifieds Place an ad eSouthernOregon Automotive Communities Entertainment Publications Recreation Calendar CUSTOMER SERVICE Frequent Questions Advertising Information Home Delivery Employment Contact Us Media Kit Network Affiliate Oregon Road Conditions & Cams Email Story to a Friend November 26, 2004 Sandy and David Franklin of Ruch found spiritual and earthly support from their new church, Jacksonville�s First Presbyterian, in coping with their daughter Paige�s rare Kawasaki Disease. Mail Tribune / Jim Craven Church gives family a warm hug Parents struggled with emotional overload as their young daughter fought a rare disease By JOHN DARLING for the Mail Tribune It was the "horrendous nightmare" every parent dreads: A child taken to the brink of death with symptoms doctors could not diagnose. But it led David, Sandy and Paige Franklin of Ruch into a caring spiritual family they’d always wanted. Two years ago, Paige came down with a puzzling set of symptoms: blood-red eyes; full body rash; red, swollen hands and feet; sores in her mouth and nose and a 104-degree fever that lasted days. She was diagnosed with the flu and given a shot. Symptoms stopped but returned in a few days. Doctors then diagnosed scarlet fever and gave her antibiotics. Again, she improved but again, symptoms returned. "The doctors kept saying she would be OK, but she was getting worse — and they wouldn’t admit her to the hospital," said Sandy, a dental hygienist who finally decided to search the symptoms on the Internet. Only one disease matched them all — the rare Kawasaki Disease (KD), an autoimmune disorder that strikes 2,000 American children each year, most of them under 8. Advertisement After a Mercy flight to Portland, the diagnosis was confirmed, and Paige was put on steroids, which, once again, brought brief improvement followed by a new onslaught of symptoms. Finally, doctors used chemotherapy drugs to shut down her immune system. But her parents were called with the harrowing message to come at once because, "We think we’re losing her." Paige, who is now 8, survived the night. With further study, doctors found she was among a tiny minority of Kawasaki sufferers who develop vasculitis — inflammation of the coronary arteries. It was complicated by aneurysms (a weakening of the artery walls), which "ballooned" some arteries to five times normal diameter and left Paige vulnerable to heart attack. "This probably has shortened her life significantly," said Sandy. "They estimate a 75 percent chance she’ll have a blockage and heart attack in the next 15 years." During the months of this "horrendous nightmare," said Sandy, "I was an emotional, physical and spiritual basket case. My back went out. I was just recovering from abdominal surgery. I was in a tailspin, depressed, cried everyday — I was totally toasted." Sandy sought help from a Medford-area fellowship the family had attended for a year. She asked the fellowship to put Paige on a prayer chain, where members phone other members to organize prayers. They told her to send an e-mail with her request. Many phone messages to the fellowship asking for help went unanswered. Unable to focus on meal preparation, she asked the church for meals they deliver to the ill and needy. They told her she wasn’t on their list and should call the following week. "I was so lost, alone and hurt. That really broke me," said Sandy. "I just quit (the fellowship)." "It wasn’t mean-spirited," said David. "The fellowship was just growing fast and we slipped through their cracks. God was at work. It led us to where we are now." Where the Franklins are now, in the "warm and loving embrace" of Jacksonville’s First Presbyterian Church, is where they found the support and healing they needed as Paige’s health began to stabilize and their personal wounds started healing. First Presbyterian, no stranger to travail itself in its controversial bid for a new building, offered to "shadow" the fragile Paige with a teen pal, Rachael Henderson of Central Point. Rachael made a gift box for Paige and joined other parish kids in painting it. She also stocked it with toys bought with her own money. Rachael protected Paige physically — she’s unable to participate in contact sports — and provided constant, cheerful company for her at Vacation Bible School the last two summers. "I felt incredibly safe with Paige taking part in anything the kids did," said David. "All the kids took care to protect her physically." For David and Sandy, the experience of being in the fold with a loving and giving church family was "immediate and cemented in our hearts" with each further act of kindness, including prayer chains, weekly prayers for Paige during services and special laying on of hands by the board of deacons, before each new and potentially risky medical procedure, said David. Despite almost $1 million in legal fees from a brouhaha with area residents about building a new church (and $3 million needed to build it), First Presbyterian’s good works extend far into the community, with thousands of dollars spent on family food and gift baskets for the ill and needy, especially at Christmas, said David. "They have an enquirer’s meeting to find out what you’re good at and how you can give, not just to the congregation, but to the community," said David. "They walk the walk and show you the difference between religion as a spectator sport and a participatory sport." Added Sandy, "We knew when we got here that God wanted us here. You’ve heard of the church as the body of Christ. Well, in this church, you don’t just attend. You learn Christ is the head and you’re part of the body and you have to function. This church uses the body to minister to the community and it’s a very alive body." The church’s minister, Larry Jung, responded simply: "We wanted to be supportive any way we could. The congregation has been very sensitive to Paige in their prayers and other help. It’s meant a lot to the Franklins and we’ve all seen their increased comfort and trust as they’ve been enveloped by the congregation’s love and support." It was the little things, too, said Sandy. Like when, taking a bit of a leap for a church retreat to the coast, she let Paige ride a long water-slide into a lake. Two female elders of the church, both of whom had lost children, came and sat on either side of the scared and weeping Sandy, comforting her and supporting her courage. One of the women, Shirley Blaul, said, "We’ve seen their faithfulness. They’ve not wavered. This church is a family. It’s a very giving church, a church of prayer. It has a very special spiritual friendliness that I haven’t really found till I came here four years ago." In addition to the church’s outpouring of support, Paige has a wish coming from the Make-a-Wish Foundation, and she was a "sparrow" in Phoenix High School’s Sparrow Club. For Paige through the Sparrow Club, Southern Oregon Heating and Air Conditioning donated several thousand dollars, which went a long way to make the Franklin’s insurance co-pays affordable. Paige’s prognosis? No one knows. "Her heart is in pretty good shape, given what she’s dealing with," said Sandy. "She’s on anticoagulants (which prevent clotting but increase bleeding). If something happens, it will happen suddenly — heart attack, a clot or bleeding. "They’re researching ways now to replace arteries by using capillaries," Sandy said as Paige slept with her head on her mom’s lap. "We just hope science can come up with something soon." John Darling is a free-lance writer living in Ashland. 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