Friday, July 26, 2013

Busca "Cerros" de ayuda- Sierra Madre Article

Hi everyone! 

Last week my mom and I had a very special fundraiser to raise awareness and funds to further RSD research! Our dear friend, Maricarmen, opened up her beautiful wine shop to us and we had an exhibition of my mom's incredible photos of Cerro de la Silla as well as a wine and cheese tasting! It was a wonderful time! Sierra Made magazine in Monterrey published an article about the event in today's paper, and I translated it into English to share it with everyone! I am so proud of my Mommy!

Thanks for checking in!

God bless- Que Dios te bendiga!

Love, Jesssica



"Busca cerros de ayuda" (Looking to the mountains for help)



Sarah Stevens, mother of Jessica, the young woman with Reflex Sympathetic Dystrophy who was treated with success by local doctors, exhibits 45 photos of Cerro de la Silla to sell and raise funds to search for a cure for the disease.

Cerro de la Silla has become the symbol of Sarah Stevens crusade to find a cure for Reflex Sympathetic Dystrophy (RSD), the terrible disease her daughter suffers from.

The mother of Jessica, the North American girl who was treated with great success by doctors in Monterrey for her illness, held an exhibition of her photos called "Monterrey through Sarah's eyes," where she displayed her beautiful photographs of Cerro de la Silla, the emblematic icon of Monterrey. Her photos were on sale to raise funds that will be allocated to continue to fund studies to find a cure for the disease.

"I came here to Monterrey for this experimental treatment for my daughter, Jessica,  and I came to love this city, it's people, and it's beautiful mountains. For that reason, I took many photos of Cerro de la Silla, because for me, it was a distraction from all that was happening to my daughter. At first, it was just to occupy my mind, but it soon became my passion."

The exhibition was held at Vinos Del Mundo on July 19th, with a multitude of guests who arrived at the scene to see the amazing shots of the mountain from different parts of the city, at different times of the day- from morning sunrise, to late night, from the hospital, and also from Missiones, Chipinque and Club Campestre as well.

"For me, the mountain symbolizes hope, strength and courage for us, as well as being the symbol of this wonderful city," says Sarah, who resides now in Naples, Florida.

While all in attendance enjoyed the photos, they also enjoyed sampling carious wines like, Vinas las tintas, Finca Flichman, and Vina Carmen, organized by Maricarmen Zavala, owner of Vinos de Mundo.

About 45 photos were displayed for sale for between 200 and 500 pesos. Also orange "Find a cure for RSD" bracelets were sold for 20 pesos.


"Everybody always asks me, 'how do you feel?' and I tell them, 'I am the happiest mom in the world because I came to Mexico hoping to help my daughter, and now she is doing great, we both have a life again."

"My daughter and I consider Monterrey our second home. Everybody that we have met here has become our second Mexican family."

When asked about Dr. Fernando Cantu, the anesthesiologist, who along with his team, saved Jessica's life, Sarah overflows with praise and gratitude.

"I am forever thankful to Dr. Fernando Cantu, to God for leading us here. All I can really say (to Cantu) is, 'May God bless you always for what you have done for my daughter... You are our angel. We will love him forever."

"Truth be told, I would have never thought these days would be possible."



"I FEEL FANTASTIC!"

Just like her mother, Jessica also see's Cerro de la Silla as a symbol of hope and of the miracle she received here in Monterrey.

"At first I thought my mom was crazy because when I was in the hospital, she would be standing by the window taking hundreds of pictures of the mountain. I would ask her, "why are you taking so many pictures!?" and she would respond, "because it is so beautiful!"

"I never could see the mountain because I couldn't get out of my hospital bed... But once I saw it... Wow...I finally understood why she was taking the photos, It was simply incredible!"


From the beginning to the end of the event, Jessica was smiling, socializing, and looked very happy. It was truly a wonderful sight to see, that after living a nightmare of pain where she could not move or eat, she can now interact normally with the world.

When asked about the condition, she responded, "RSD is devastating for the patients. They cannot move, or eat, and they are stuck in bed in agonizing pain. But it affects their families too."

Back in 2003, Jessica was 16 years old, living in New york with her parents. After finishing the school year, she went away to a summer camp where she was bitten by a tick on her right leg. Soon after, the problems began with severe headaches, strong pain and stomach paraylsis.

No doctor could diagnose the problem. She continued to progress with more symptoms, until eventually, she developed painful lesions and even being touched or wearing clothes was agonizing for her.

Her mother took her to many of the best hospitals in the United States, while she continued to decline, becoming unable to move or eat. Finally, a doctor at Columbia University made the diagnosis of RSD and referred her to Monterrey for the experimental ketamine coma protocol.

"I want every patient to experience the recovery that I have been blessed with...that is my new mission," says Jessica, now 25 years old.

"I pray that one day we will find a cure for RSD, but for now, Dr. Cantu and his team are the closest thing we have to that. What they have done for me, and others like me, is remarkable. I believe the cure will be found here in Monterrey."

Jessica went through two ketamine comas and spent 16 months in the hospital, but when asked how she feels about those moments, she changes the subject.

"How I feel...today, in this moment, is fantastic! I feel blessed to be able to fight for others suffering from the disease and I feel very proud of my mom and her photos!"



"Where there is life, there is hope," she says. "I am now back in school, studying medicine and I would like to come back to Monterrey and work with Dr. Cantu."

Jessica considers Cantu her second father. When she gets married, she wants to have him on one arm, and her biological father on the other.

She laughs, saying that she doesn't actually even have a boyfriend, "But I will work on that!"

"THE FORCE BEHIND THE EXHIBITION"

The organizer behind this exhibition is Maricarmen Zavala, daughter of Maria de Guadalupe Zavala, who is better known as "Dr. Rainbow," who volunteered to help the protocol and has closely followed the progress of Jessica.

"My mom says that after the first coma, "Jessi," had memory loss and did not recognize anything or anyone... Not even her mother. Can you imagine the pain Sarah felt, as her mother?" My mom would go everyday to the hospital wearing bright, vivd colors, and even though Jessi didn't know anything, she responded to the bright colors and began to associate my mother with that." says Maricarmen.

"We have become very close family friends, we love and care for them very much. Recently we were out having dinner together and Sarah was showing me some of her photos and I said, "what a waste to not share these!" Something so beautiful, for us we see Cerro de la Silla daily and so often we do not appreciate its beauty. It takes somebody coming here from outside to open our eyes to the beautiful things right in front of us!

She told Sarah, 'let's show the public your photos.' For now, we only showed these photos for one day, but we have not ruled out having another exhibition in September with many more of Sarah's images of this monumental, beautiful emblem of Monterrey."





"I lift my eyes up to the mountains- Where does my help come from? My help comes from the Lord, maker of Heaven and Earth."- Psalm 121



+To post a comment, click on "comments" below+

8 comments:

Rosemary said...

Dear Jessica & Sarah,

Words can never express the utter joy in reading this article and looking at those stunning photos of the mountains. Where there is a will, there is a,way and that has proven true time and again for you both. You are both so brave and strong willed. God continues to work His miracles through you. I wish I were physically there beside you but always know I am with you in spirit wherever you may be. It is such a blessing to read these uplifting blogs after reading of so much pain and suffering this disease causes. We must work hard to find a cure for those living with this disease and honor those whose lives it has taken. I love you!

Rosemary
XOXO

Anonymous said...

HI Jess and Gina,

I am sitting here overwhelmed with joy at reading this article. Your journey has led you to this point, this place, brimming with love and appreciation and thankfulness. You are the living proof that there is a loving God and that He listens to our prayers! I also believe that God helps those who help themselves, and you have stopped at nothing in your quest to return to health and vitality. God met you at the place of your efforts and breathed in the breath of life. You both look so beautiful and happy! You both deserve it! I am thrilled for you!! Also, Gina, your photos are breathtaking. Yet another skill for an amazing woman!! Love always, Angel xoxoxo

Karen and Al said...

Jessica,

I just found you blog. In fact, I just heard of this disease a few weeks ago when reading Facebook about another young woman going through the same horrible disease. I am sending her the link to your blog with the hopes that she will be able to find some help as you have. If you could offer any fundraising suggestions, it would be much appreciated. She lives in New Mexico.

Here is a link to her blog if you are interested in reading about Makayla.

https://www.facebook.com/makayla.cardona

I will go though your blog in the next few days, but from what I've read so far, yours is an amazing story!

Karen and Al said...

Can you offer any suggestions as to where Makayla could go for help with funding? She is trying to get the money together for the Ketomine treatment, but unfortunately is a long way off.

She is a 24 year old mother of two small daughters. I don't think she is well off financially. I ran across her on Facebook through a cousin and this horrible disease has really touched my heart.

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Jessica's Journey to Getting Her Life Back

By Sarah Gina (Jessica's Mom)


As we begin this journey toward renewed health we would like to express our sincere heartfelt thanks and appreciation to Dr. Anthony Kirkpatrick and all the work he has done and continues to do in order to bring patients like my daughter Jessica back to a more meaningful life and restored from this devastating illness. Also, special thanks to Dr. Fernando Cantu and his team of doctors in Mexico for taking on a difficult case like my daughters, Words cannot express the renewed sense of hope that we have that one day, our Jessica, can regain her life that has been taken away from her – God Bless you all!

Jessica’s Story

Once an A+ student who loved school, was involved in many extracurricular activities, played varsity tennis, lacrosse and gymnastics and enjoyed spending time with her family and friends, our daughter Jessica has spent the last 3 years incapacitated, paralyzed, unable to sit or walk and eat. She spends her days confined to a hospital bed, wearing sunglasses and noise-canceling headphones, due to severe light and sound sensitivity.

Jessica and her sisters, 2 mos. before becoming ill

The pain she feels is indescribable and all attempted treatments have not even come close to relieving her suffering.

She has seen many doctors, undergone numerous painful tests and procedures, has been prescribed various medications, and has been hospitalized frequently including being intubated and on a ventilator. She is severely debilitated and currently is only 92 pounds. This is certainly no life for a 21 year old young woman!


Jessica is suffering from neurologic Lyme disease and Reflex Sympathetic Dystrophy (RSD), a severely debilitating and painful neuromuscular disorder. She suffers daily with constant sharp, stabbing, tingling and burning pain; throughout her body; severe headaches; paralysis; intense muscle spasms; gastroparesis; seizures; twisting of her limbs (dystonia); sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; excessive sweating; swelling; fevers; softening of bones; decreased hair growth; redness and discoloration of the limbs; and painful skin ulcers. The pain is constant and unrelenting, but despite her suffering, her faith in God remains and she still has hope for her future.

Jessica's painful skin lesions

Jessica's journey began in 1999, when she was only 11 years old. She became very ill with Mono and was bed bound for 3 months. She subsequently developed RSD (stage 1) of the lower right leg. She received early intervention and returned to playing sports and enjoying her life.

Jessica, age 15, at summer camp

Four years later, in 2003, while away at a sleep-away camp, she developed a rash behind her right knee, coincidentally in the same leg that previously had RSD!

At the time, the camps nurse & doctor told her that it was “duck rash” – a rash from swimming in the lake with duck feces. However, Jessica was able to obtain photos from camp from another camper which shows the classic “bulls-eye” rash from Lyme disease! It wasn’t until much later and only after developing symptoms and becoming very ill, was the diagnosis of Lyme disease and Babesiosis (another tick-borne infection) made.


Most people (and doctors!) have no idea how serious Lyme disease can become and no clue how to properly diagnose it. Unfortunately, if she would have been promptly diagnosed and treated for Lyme disease, the RSD would not have been triggered and she would not be suffering.

July 2003, Jessica's Lyme disease rash

If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!

During these past three years and with the pain becoming more intense and unbearable she has been seeing Dr. Finkelstein for pain management. He has even made house calls to spare her the pain of coming by ambulance to his office. Jessica has been treated with multiple pain medications, at the highest possible doses, as well as an implanted dilaudid pain pump, which delivers potent medication straight into her spine. Many doctors have told us that with the amount of medications Jessica was taking would be enough to “kill a horse”—yet they had little to no effect on her. If it wasn’t for Dr. Finkelstein trying to alleviate her constant, severe, unrelenting pain, I don’t know how she would have managed. He is very special to us as well.

Recently Jessica was transported by air ambulance to Tampa, Florida to see Dr. Anthony Kirkpatrick, a world renowned RSD expert. Dr. Kirkpatrick told us that Jessica is one of the most debilitated patients he has ever seen.

Jessica getting into the air-ambulance to go see Dr. Kirkpatrick

Upon his testing and because Jessica's condition is so severe, Dr. Kirkpatrick is recommending the only treatment available that can possibly help relieve her suffering, and afford her some semblance of a “normal” life - the Ketamine Coma Procedure - a clinical trial that is being conducted in Monterrey, Mexico.

During this procedure Jessica will be put into a coma , with the hope that her nerves, brain and spinal cord will “reset” -so that her nervous system sends the correct signals to her brain.


Yes, this is a radical, scary treatment, however, for Jessica, "scary" is thinking that she could spend the rest of her life in this condition, unable to walk, eat, or take care of herself. Since all reasonable treatments have failed to help her, we feel we must try everything possible to help Jessica regain her life.

We understand that due to Jessica’s fragile condition, there is a high risk associated with this procedure. We are also aware that other patients with severe RSD like Jessica's have had success.

Jessica’s goal is to one day become a doctor. Our hope is that with this study she can have that chance. As her Mom, I know that she will be a great doctor because when a patient presents in her office and says “Doctor, I am in pain and words cannot express how bad it is” – my daughter –Dr. Jessica– will be able to say - :I know how you feel, I’ve been there too. So, take a seat and let me tell you a story”….

We are so thankful and feel so blessed to have been led to Dr. Kirkpatrick.

God is good and with his help guiding Dr. Cantu and Dr. Kirkpatrick, our hope is for Jessica to be able to return to us whole again and pain-free!