By David Freeze

For the Salisbury Post

SALISBURY — Emma Myers has some things on her bucket list. She wants to go bear hunting and offshore fishing. Most aren’t typical for a 16-year-old girl, but then Emma’s journey over the last 12 years isn’t typical either. In fact, most medical professionals haven’t even heard of Emma’s disease.

Complex Regional Pain Syndrome has been described as the most painful disease known to man. There is no cure, but remission is possible. Emma is making progress and the prognosis is good for her return to normal life. Her treatment costs over $3,000 a week and family members have incurred steep living expenses near the Spero Clinic in Fayetteville, Arkansas.

Grace Lutheran Church’s 13^th Annual Men on Missions Fish Fry will benefit Emma’s overwhelming medical bills and other expenses since CRPS took control of her life. One of Rowan’s largest fundraisers, church members prepare fish dinners available for both dine-in and carry out. A huge raffle includes items that are being accumulated now, but already include a family photography session, a half day fishing excursion, Benelli shotgun and wildly popular pallet art.

At age 4, Emma had the final surgery to correct a club foot on her right side. Pain began to creep up that side until eventually she couldn’t walk or go to school. She couldn’t stand to be touched by anything in that area. CRPS, also called reflex sympathetic dystrophy syndrome, is a chronic pain condition in which high levels of nerve impulses are sent to an affected site. It most often appears after an injury, but doctors think Emma’s case began with the surgery. Experts believe CRPS happens because of dysfunction in the central or peripheral nervous systems.

Emma’s mom, Melisa, said, “When there didn’t seem to be much hope, other than physical therapy to just get her walking again, I started researching like crazy. Emma had been doing physical therapy in Chapel Hill for over a year and while she gained her mobility back there was no reduction in pain and the CRPS started spreading a bit. Through my research I found a doctor in Cary, North Carolina, Dr. David Pascal, who worked with CRPS patients. He was wonderful and offered Emma a lot of hope and encouragement.”

After seeing Emma for an extended length of time, Dr. Pascal told the Myers family that he really felt she needed a much more intense program than he could offer and advised them to get to the Spero Clinic. Dr. Pascal was a mentor to a doctor at Spero, where more extensive treatment was available.

Melisa said, “But it took us a bit to be able to get here because of the cost. Thankfully after much prayer we knew we had to get her here, this is her life we are fighting for. We were able to borrow the money to get started and here we are! However, Emma has been a difficult case, the average patient is here 12-16 weeks.  We are working on week 32, so it’s been quite an unexpected and long battle, but it’s working!! Her pain started having some drops on week 27 and while we have a long road ahead of us, Emma is truly excited for the future and is making plans and goals!”

Back to those bucket list items. Emma has them squarely in her sights and said, “One day, I want to just run and run. And walk with my grandpa, then hike the Continental Divide!”

Emma will graduate from the Spero program when she has two consecutive weeks with no pain.

Chairman Mike Yost and Robin Bernhardt head up the church’s effort. Along with an active committee, they have been planning for weeks and expect a big day.

Bernhardt said, “Our church members get behind the fish fry in a big way. We want to blow it out this year and make Emma’s benefit the best ever.”

Yost said, “To decide who the committee would choose, we met three times. In the end, with a lot of prayer and thought, they all said God led them to Emma.”

Top fish fry proceeds in the past have been just short of $60,000.

Charlie Myers and Ronnie Williams, Emma’s dad and granddad, will both be at the fish fry, while Emma and Melissa will remain in Arkansas. Other family members are Emma’s siblings, Olin, Cole and Alli.

New this year is a raffle set up in the open on the church lawn. Tables will be separated with plenty of room to walk around each one. All winners will be drawn that evening. Flounder fish plates are $12 for adults and $6 for kids and include fries, slaw, dessert and a drink. Hot dogs will also be available. Plenty of parking and a shuttle service are available. Dine-in happens this year in one location with carry-outs in another area, all starting at 4 p.m. and continuing until all the fish is sold.

For more information or to make donations, call Yost at 704-213-1262, or Bernhardt at 980-234-4140, or the church at 704-857-8641. The church is located at 3020 Grace Church Road.