McDowell family deals with rare diagnosis; heading to Italy for treatment

A benefit concert for Stephanie Harklerode will be this weekend at Glenwood Baptist Church to help fund her trip to Italy to get a 10-day infusion to help with CRPS, a condition that if not treated quickly could debilitate her for the rest of her life. Also pictured are her husband Jamie Harklerode and their two sons, 13-year-old Riley and 9-year-old Logan.

It started out as typical Sunday afternoon in the spring.

The Harklerode family were cooking out, doing some yard work and playing with their two boys outside, not knowing that just a few hours later a rare condition with no cure would change their lives.

“I thought I had just twisted my foot. I went to go sit on the deck, and went back to stand up and my foot gave out from under me,” 34-year-old Stephanie Harklerode told The McDowell News recently.

Her husband Jamie had to carry his wife into the house because she couldn’t walk. Her foot started turning black and blue and was ice cold.

“She ended up at Mission’s emergency room on April 13 where we spent the next 21 days while they ran a battery of tests, but her pain was so intense,” said Jamie. “She feels as though her foot is being crushed. Mission did a good job on an early diagnosis.”

Stephanie was diagnosed with complex regional pain syndrome (CRPS) which basically means the nerves in her foot have become injured and they are telling her brain that her foot is being crushed—all day, every day. She is unable to work or take care of her family like she used to.

“That is what she feels constantly. She lives with this every day and hasn’t walked since April 9. Mission transferred her to Duke where she received five days of ketamine infusions to help with the pain,” said Jamie.

There is no cure for CRPS, but an experimental treatment in Italy has had promising effects. The treatment was available in Winston-Salem, but Stephanie wasn’t accepted for the program, so a trip to Genoa, Italy is in the near future. The treatment is a 10-day infusion of neridronic acid which has been used in Italy for the past five years with promising results.

“Italy is my best hope. They have had tremendous success with it, and from everything I’ve heard from people who have had the treatment, they have had major improvement,” said Stephanie. “I’m hoping to get my life back.”

The treatments cost anywhere from $10,000 to $15,000 out of pocket, plus the expenses of a round-trip flight to Italy and hotel stay. But without trying to get the treatment, Stephanie will have to deal with the pain of CRPS for the rest of her life.

“Typically you have between six months and a year or this is your life. We are kind of racing against the clock because I just hit the six-month mark. We are just waiting for the call,” said Stephanie.

She worked full time as an assistant clerk at the McDowell County Courthouse where she has had to take a leave of absence. Recently, the courthouse held a hot dog fundraiser for Stephanie where folks waited over an hour to get a plate and make a donation to her fight. They raised over $5,000 to donate to the family.

Melissa Adams, clerk of Superior Court, said Stephanie is a dedicated assistant clerk with over 15 years of knowledge and her presence as a left a void in their work family.

“Stephanie supervises three deputy clerks that work the superior criminal and district criminal courts. Her knowledge of the clerk’s office, especially the criminal department is remarkable,” Adams said by email. “We miss her terribly and continue to pray for a complete recovery. We look forward to the day she returns to work.”

Jamie is a lieutenant at Marion Police Department.

“They are good people with big hearts and they mean a lot to me and the Marion Police Department and we are with them during this tough time. I don’t think you find two better people in this world than Jamie and Stephanie,” said Chief Allen Lawrence.

Stephanie and Jamie said they are both grateful for the support they have received in their time of need.

“The community has been unbelievably supportive. It is a great feeling to live in a community that is so supportive and have shown so much generosity,” said Stephanie. “It’s so touching and humbling. I am so thankful for everyone.”

A gospel singing is planned for Saturday at Glenwood Baptist Church starting at 6 p.m. featuring Addie’s Chapel Choir, Purpose Quartet, Greg Conley, Larry Ray and more. A love offering will be taken up and admission is free.

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