Rising above the pain

For 12-year-old Emma Harrington a fractured ankle revealed a more complex and painful medical condition. Emma is a bubbly preteen. She is sweet, pretty and has a pleasant personality. She loves 4-H activities, her animals and her youth group at Sunset Church of Christ. But Emma is in constant pain.

Emma, daughter of Amanda and Mike Harrington, suffers from Complex Regional Pain Syndrome or CRPS. This is a medical condition where long–lasting unbearable pain is experienced. It usually begins in a limb and can migrate throughout the body. Burning, stabbing or shooting pain is often felt. CRPS may occur after trauma, but in children and teenagers, it may occur with little or no injury.

Emma was diagnosed with the syndrome in January, although she has been dealing with the pain since October when she fractured her left ankle in three places. The fractures were non-displaced fractures (broken pieces still in alignment), her mother explained. Emma said she was speed walking through the living room and her foot hit a wood strip on the couch.

"The swelling was bad and the discoloring was also bad," said Amanda Harrington, noting that two days after hurting her foot she was in excruciating pain.

"It has never gone away," Emma said.

It was a month before they knew about the fractures. Her mother said that she got in to see a local foot specialist after a local orthopedic specialist refused to see her because of a past misunderstanding. The foot specialist ordered an MRI. Although he knew what was wrong, he sent Emma to a pain specialist in Lubbock for a diagnosis.

Emma has been seeing Dr. Racz once a month. Even traveling to Lubbock is painful in the car, especially hitting bumps in the highway. She had a five-day stay in January when diagnosed and a one-day stay in April. She has had epidural infusion treatments where a small catheter is inserted in her spine. She also takes a sleeping pill to help her sleep because of the pain. She didn't walk on her own for five months because she couldn't bear to have anything touch her foot.

"She can't sleep without her heating blanket," her mother said, adding that she also can't have anything with ice and can't eat ice cream because the cold makes things worse.

The pain syndrome migrated from the foot to lower back and hips and has now reached her rib cage just under the bra line.

"Dr. Racz said it didn't start in her foot – it started in her back," Amanda Harrington said.

Emma is never without pain. Even with meds, she experiences minimal pain.

"Sometimes it decreases so I can stand it," said Emma, adding that the pain often stays at 5-7 based on a scale of 10.

"There are days the pain goes above a 10," Emma added.

To make matters worse, the nerves in her stomach seem to be involved now. Eating causes pain, so her mother has decided to switch to juicing and making smoothies for her.

Amanda Harrington said that this year she has pulled Emma out of every activity that filled her normal daily life. She doesn't want to put added stress on Emma in any area.

"It's been hard because Emma can't show animals," Amanda Harrington said, adding they already had to sell one horse.

Emma is currently going to physical therapy twice a week. She said there is no set routine each visit. What she does depends on how she feels and how bad the pain is at the time.

Emma's sister, Sammi, 13, has had to take on more chores and responsibilities. Emma feels bad about that and has always hated to ask anyone to do anything for her.

"I hate having people do things for me, but sometimes I can't do it," Emma said.

"She hides her pain, so many don't believe she is in that much pain," her mother said, noting that Emma's nerves jump, so she thrashes in the bed and it hurts to take a deep breath.

Emma and Sammi are home-schooled. Emma said she loses focus quite easily while studying and has to take more breaks now.

Amanda Harrington has spent a lot of time trying to find out how much money it will cost up front to get Emma to Cook Children's Hospital near Fort Worth. The insurance the family has will not cover the cost, which just for the hospital is upwards of $56,000.

"It's overwhelming," said Amanda Harrington.

The ultimate goal since the diagnosis was to get to Fort Worth so Emma could see a medical team and treat everything as a whole. She would see a pain management person, a physical therapist and psychologist and learn about biofeedback and relaxation techniques.

"Whatever she needs to get it under control and live with it," said Amanda Harrington. "She needs the coping skills and techniques to get through it."

"If we can get it under control, there is a possibility it won't progress," Amanda Harrington said, adding that is what they have been told.

Winter was hard on Emma. Cold or damp weather makes the pain worse. And there won't be any swimming this summer because the water has to be over 83 degrees and preferably 90 degrees.

"The CARC Farm pool is the right degree, but it costs $50 a month," Amanda Harrington said.

The financial hardships on the family have been many, including doctor bills, gasoline to travel to Lubbock and motels. Emma also needs new memory foam shoes every two to three weeks because memory foam breaks down faster. Her clothes can't be tight fitting either.

Amanda's friends helped organize fundraisers that ultimately led to an anonymous donation that is paying for Emma's treatment and beyond.

The fundraisers were a car wash and an enchilada dinner at Sunset Church of Christ. Through May 31 a Booster.com T-shirt fundraiser is ongoing and a Go Fund Me treatment fund for Emma has been established and has raised over $3,000.

The tee shirt available for purchase on Booster.com/emmaharrington is Cavemen blue with a choice of Bulldog orange, red or yellow lettering. On the front of the shirt it reads: "Let's put out the fire for Emma" with an orange ribbon heart. On the back of the shirt it reads: "This is the most painful disease in the world and there is no cure yet." The tee shirt costs $20 plus $5 shipping.

The family's prayers have been answered. Emma and her mother left for Texas Wednesday to begin her treatment process.

"If it wasn't for the people who organized the fundraisers, this would have never come about," Amanda Harrington said.

"A huge thank you to everyone who helped," she added.