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Community Corner

Jessica Stevens' Inspiring Story

David and Sarah Gina Stevens speak candidly of their daughter's struggle with Lyme disease and RSD.

Jessica Stevens had seen nearly a dozen doctors who suggested she was either depressed, had fibromyalgia, chronic fatigue syndrome or myriad incorrect explanations.

The Stevens family had already transitioned and resettled in Naples, Florida when Jessica was finally properly diagnosed with Lyme disease and Reflex Sympathetic Dystrophy (RSD).

Lyme disease is transmitted through an infected tick. Symptoms of a bite can include a "bulls-eye" rash or flu-like symptoms. If left untreated, it can progress into a debilitating illness, affecting the heart, nervous system, muscles, joints and skin. Lyme disease is often misdiagnosed because its symptoms are similar to other conditions. The prescribed testing does not always detect the Lyme bacteria. Lyme disease has been reported in all 50 states, as well as worldwide.

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RSD is a chronic neurological disorder occurring when the nervous system malfunctions in response to an injury or illness. Some symptoms of RSD are constant stabbing or burning pain, light and sound sensitivity, severe headaches, skin ulcers, muscle spasm and atrophy or paralysis. This rare condition is also often misdiagnosed.

It was determined that the best treatment for Jessica's condition was back in New York. Jessica and her mother, Sarah Gina, traveled back to New York and stayed in a hotel room until being welcomed in by an old friend. Cecilia Arrango, owner of Cecilia's Salon on Franklin Avenue in Garden City, took Sarah Gina and Jessica in to live in her home for more than six months when the Lyme disease treatments first began in September 2006.

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Tokens of support began springing up from some of the most unexpected places. As medical expenses began mounting, new neighbors in Naples, Ray and Carol Biron, set up Jessica's Journey Savings Fund. Their local church, Lutheran Church of the Resurrection of Garden City pastored by Jeff Browning, has been incredible. The congregation has been there for the Stevenses every step of the way. They have been making meals and collecting donations for the family.  Also, their church in Naples, Peace Lutheran Church pastored by Dennis Liebich, continues to keep Jessica in the parish's prayers and has offered funds raised.

The Garden City Fire Department, where Jessica's father, David Stevens, has been a volunteer for more than 20 years, has been amazing. The brotherhood of the fire department has tirelessly supported the Stevenses. Chief William Graham and 2nd Assistant Chief Bill Castoro have coordinated several fund-raising events to benefit the family.

"I never thought of myself as anything special; people, amazingly, remember the things you do, your kindness is inflated when it comes back to you," said David Stevens. "Just welcome it; all you can say is thank you, thanks."

Current neighbor, Maria Hermann, often cooks for the family and the church of her daughter, Doris Mantz - the Christian Reformed Church located in Windsor Connecticut, pastored by Jerry Lion , has raised money for the savings fund.

The afternoon after the gala art auction at Lutheran Church of the Resurrection David and Sarah Gina Stevens had a chance to reflect and send their own messages of gratitude back to friends and family of Garden City.

Christy Hinko: How are you today, Sarah Gina?

Sarah Gina: When you face something like this in your life you really don't know who is going to be there for you and who is going to be there to hold your hand, send a meal or send some kind words over the phone. I just hope to one day bring Jessica there to meet everybody who has helped along the way.

Christy Hinko: When will Jessica return home?

Sarah Gina: That's such a hard question because when we originally got here, we knew that this was probably Jessica's last hope because it was one of the most debilitating cases that they saw.

The ketamine coma is still in trials, being conducted in Mexico and Germany. It is generally the treatment for patients with the most severe cases who have exhausted all other options. During the procedure, patients like Jessica are put into a ketamine-induced coma. The coma is expected to reset the brain's nervous system response. Patients are kept alive by ventilator while induced. To date, about 100 patients have taken part in the study. The majority of patients have success with the treatment. There are as many risks associated with the procedure as there are benefits.

Christy Hinko: What kind of treatment will Jessica need when she returns home?

Sarah Gina: Unfortunately, this study really should be offered in the United States, but isn't. So patients, once they have exhausted all other options, have to come here.

Jessica will need a supplemental ketamine booster treatment when she returns home to the United States, but it is a challenge to find doctors qualified to continue the treatment.

Christy Hinko: How has Jessica responded to the ketamine coma treatment?

Sarah Gina: With the coma, there were some things that were sustained and some things that were not sustained. In Jessica's case, hers came from infection, the Lyme disease which then triggered her RSD.

Christy Hinko: How is Jessica today?

Sarah Gina: She's been battling infections, but today a little bit better, at least the fevers have broken. The doctors say that hopefully she will come off the antibiotics and we can finish doing what we need to do. As the doctors have said, it has taken Jessica four years to get here; it is not going to take her one month to get better. It's a daily struggle, and it's small steps, as Dr. Cantu says, "Small steps each day, taking small steps to hopefully getting her back better than when she came."

Dr. Fernando Cantu of The RSD/CRPS Treatment Center and Research Institute is an anesthesiologist and specialist in pain management that heads the ketamine coma study in Monterrey, Mexico.

Christy Hinko: How are the conditions in Monterrey, Mexico?

Sarah Gina: This is probably the cleanest hospital, the nicest hospital. The staff is unbelievable and the doctors all speak English.

While talking with Sarah Gina, she pauses and breaks into a Spanish conversation with a nurse that stops to check on Jessica. Sarah Gina was not proficient in Spanish before she traveled to Mexico. The extent of any formal training, she remembers taking classes in high school and college. For an eight month period she previously stayed with Colombian friends on an international trip to treat Jessica's Lyme disease. Her Spanish language abilities returned naturally.

Sarah Gina: I never used it [Spanish] and then lost it. It was God working in mysterious ways because I never knew why I would need Spanish again, but it certainly has become handy. Sometimes when you are going through things in life, you don't really realize what the reason behind them is and then I land here in Mexico and I say, "Ok Lord, You have a sense of humor; I guess that was the reason for relearning Spanish."

Christy Hinko: How has Jessica's illness affected your faith?

Sarah Gina: When you go through something like this you go through a lot of waves of emotion, but I will say as hard as this has been, as difficult as it is to have your daughter ill, it has strengthened my faith in God more than anything has. If it wasn't for God or for my faith, I don't know where I would be.

For months, Sarah Gina has been contributing to a personal blog to record the development of Jessica's recovery. Friends and fans can follow the blog daily for updates on Jessica's condition.

Christy Hinko: How has this changed your family?

Sarah Gina: When it is your child, it brings things to a totally different level. When you go through something like this, it's unbelievable. It certainly changes the dynamic of your family in many ways. People say, "I know you can't wait for life to be normal," and I say, "Really, life will not be normal." It will be what I call a new normal, but I don't think people can go through something like this and not come out of it differently.

David Stevens: It's been depressing, some nights you get very angry. Other times we think we've turned the corner and then we realize it is not so.

Christy Hinko: How has the church helped your family?

Sarah Gina: The people have been amazing. You never know who is going to step up to the plate, but I have to say that the people of the church and around Garden City have just opened their arms to us. They've been truly amazing. I could not have made this journey with Jessica without everybody's love and support.

The Stevenses have been members of Garden City's Lutheran Church of the Resurrection for nearly 20 years. The congregation has started a food chain, delivering meals, donations and other services to the family.

Christy Hinko: What is your good day?

Sarah Gina: A good day will be when my daughter is well and on her feet and has her life again, that will be the best day, but for now, a good day while I am here is when Jessica's pain is managed and when I see those little glimmers of the old Jessica. That's what I miss, those are good days.

This current school semester would have possibly been Jessica's last year in college. She has always aspired to become a doctor.

Christy Hinko: Do you have advice for others suffering with either disease?

Sarah Gina: With Lyme disease, I think there has to be better testing. There's a major problem with the testing for Lyme disease, a lot of people are going undetected that may have it because the testing in ineffective. People should have the chance to seek any type of treatment that they and their doctors think may help them. With both illnesses, just better awareness. It's prevalent and people should know about it.

David Stevens: You always find someone worse than you, you can always find someone down, someone who wants to hear something good. Everybody has issues, it's the one thing I have learned from this entire thing, everyone has a story; life looks perfect, but when you get to know them and peel away the layers they've got issues just like you, worries, fears or someone in their family isn't well, some issue and it kind of connects you.

Jessica and her mother were expected home before Thanksgiving 2009, but with complications like infection, it may be another month before they return.

"Without hope you really have nothing and we realized when we came here that we were taking a chance because of Jessica's debilitated state," said Sarah Gina. "So far, and not because she's my daughter, Jessica is an amazing person, her strength and her perseverance, she's amazing."

(Editor's Note: To read more about the outpouring of community support for Jessica Stevens, visit http://patch.com/FGXA.)

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