Saturday, April 28, 2012

I MET FIRST LADY MICHELLE OBAMA!!!



Hi!! Sorry for leaving everyone waiting with anticipation to hear all about my meeting First Lady Michelle Obama!!! It was so incredible and I have so much to share!

We got home pretty late last night and I still had to pack for my trip to Monterrey today, which we had already booked weeks ago before all of the excitement!

We landed in Mexico, safely, and I now finally have a chance to sit down and update everyone!

...So, Where do I even begin?

It has been such a whirldwind of a week!

Thursday night my story aired on TV on both NBC and FOX... Both reports were fantastic! Fox4's report by Patrick Nolan had such a huge interest and high demand that it was already re-aired twice since then!! It is the most viewed, shared, emailed, etc, story on their site right now, which is really cool amd so great for awareness!!!

 Friday morning I woke up, with the gorgeous Florida sun shining through my window, like any other day. Suddenly, it hit me... I am going to be meeting the First Lady of the United States... Tonight! Ahhhhh!!!!!! I could hardly contain my excitement as I woke up the entire house to remind everyone today was the big day...as if they could forget!  ;)

It seemed so surreal!!! I sometimes still have serious doubts as to whether all of these things are actually happening to me in real life... Or if I am still asleep in the coma, dreaming about it!

My mom left early to go get her hair and makeup done and my sisters did mine and helped me get all dressed up, which was a lot of fun!! I haven't 'dressed up' in over 6 years!

Here is mom and I all dressed to go and meet the First Lady!!



...We cleaned up well, I think :)

On Monday when I found out that I was going to be an honorary guest to meet Michelle Obama, I began putting together a packet of information to hand to her.

Here I am, all ready to go, awareness information in hand!



At 4pm we arrived to downtown Naples to the very upscale hotel called "The Inn on Fifth" where the dinner reception for Mrs. Obama was being held.

When we walked in there were tons of secret service and police men still doing their 'sweep' of the hotel..it was so surreal to see in action!



We were told to wait down in the lobby until the building was cleared for entry.

While waiting, I heard someone calling my name... It was Michael and Mabel, the two coordinators of the reception who invited me! It was so nice to meet them and put faces to their names! 



Mabel is from Monterrey and was born in Hospital San Jose! It's such a small world!


Upon entering our hands were stamped and we were given GREEN wristbands...anyone with a green band was going to get to meet Mrs. Obama and take a photo with her!



Jason escorted us upstairs and we enjoyed a cocktail reception while we waited anxiously for Michelle's motorcade to arrive. Most of the people there had seen my story on TV the night before and everyone was coming up to me, saying, "you're the coma girl" and wanting pictures and asking me questions... I felt like a celebrity! :)

Finally First Lady Michelle arrived and we were escorted downstairs to a private room!

I waited outside excitedly, wondering what I should even say to her!



The door opened.... And there she was, the first lady of the United States, in a beautiful red dress, smiling at me!




When she saw me being rolled in, she said, "Hi Jessica!" and extended her arms to me to give me a big hug!!


I told that it was my honor to be her guest and be able to meet her... She replied, "No, the honor is all mine to have you here... and I don't just mean "here" at this event tonight ... I mean here, as in "alive"."

She asked me to tell her my story and spent the next 5 minutes just listening to me tell her everything I have gone through in the past 6 years--- the tick bite, the suffering, the hundreds of doctors, and the  incredible pain of RSD, that made me feel like I was being burned from the inside out.

I told her how I was paralyzed, bedridden, fed thru a feeding tube, couldn't tolerate being touched, how lights and sounds caused me to have seizures and how I was told I was going to die.

I showed her this pictures of the skin lesions on my arm, and then the picture of me in the ketamine coma.

She looked at me, in shock, and said, "oh my gosh... You poor baby...You look so good, so pretty..... I can't believe that was you! ...I think I need to hug you again, just because I CAN without hurting you!"

I told her all about the ketamine coma treatment that saved my life... In Mexico... And how  it is not currently available in the United States.... Even though ketamine has been approved by the FDA for over 30 years!

I told her how my family had to be separated for 2.5 years while I struggled for survive with my mom sleeping on a couch in my hospital room for 14 months straight. I told her how this is not just an isolated rare case... That there are many people in desperate need of this treatment, here in our country, suffering greatly.

She looked at my mom with tears in her eyes and told her she was an incredible mother, and that she would do the same for either of her two girls.

She turned back to me and said, "So, after seeing hundreds of doctors, you had to go to Mexico and go into a coma to get well?.... Do you have any further information about your treatment and illness that I can read tonight on my plane ride back to DC?"

I said 'yes!' and handed her my packet of information :)

I also handed her another packet of info for her husband... The President! Who better to get information into the presidents hands than his wife?!

My mom and I gave Michelle a hand-painted cross from Monterrey for her to put in the White House and also two little hand-made mexican dolls for Malia and Sasha.




We hugged again and she told me that I was  "glowing with life" and that I was the poster child for why our country so desperately needs healthcare reform.

She then motioned for another woman who was standing in the room to come over. Mrs. Obama introduced the woman as her chief of staff and executive director of the White House (!!!) and asked me to share my story with her! I did, and she gave me her contact information and said we would stay in touch.



I gave everyone  I met, including Michelle, one of my "Jessica's Journey" awareness bracelets, so they would remember me later that night when they went home and took it off :)

There were some professional pictures taken of me hugging and meeting Mrs. Obama, but I do not have access to them yet. As soon as I do, I will post them on here!

Afterwards, we went upstairs to the banquet room to listen to her give a speech about her husbands campaign. I have to say she is truly a very gifted speaker.



At one point during the speech she said, "No American should be without a job... Or an education... Or without access to heathcare..."

She glanced toward me and mom, who were sitting in the front row, and added...."and no family should have to exhaust all of their resources to pay for medical care, outside of the country, for their dying child."

Everyone clapped. WOW. Is all I can really say about that!



She then spoke of change.... The changes we need to see in our country and how change does not happen overnight, but rather, in "small steps"... I smiled as I thought about what Dr. Cantu always says "small steps=huge advances" :)



I think it goes without saying that yesterday was a day that will be etched into my memory forever!!!! An amazing experience that I will always treasure and be so thankful for!



Through all of my years of suffering I never could have imagined a day when I would be meeting the First Lady, and sharing my story with her!!!! God is so awesome!!

There were signs everywhere, little and big, yesterday showing me that He orchestrated this entire meeting, and I pray and hope it will lead to more awareness and bigger and better things to come for all suffering in the near future!

Last night fox re-aired my 'miracle coma' segment and at the end they added this brief clip:

RSD patient meets First Lady:


Tomorrow morning I will be presenting a 30 minute video I have put together about my journey, set to inspirational music and speaking about my 'Miracle in Mexico' at the Union Church in Monterrey, whose pastor, Dave Long, and entire congregation continually prayed for me and were such a strong physical and emotional support to my mom and I during our time living here. I can't wait to share my healing, in person, with them all!

I am looking forward to spending the week with my 'mexican family' and sharing all of the excitement and new happy memories in my life with them! I continue to feel really great, but these periodic trips for follow up care and evaluation with the doctors who saved my life in Mexico are vital and key in keeping me this way :)

Michelle Obama even wrote a little note for me on this picture of me and my heroes, Dr. Cantu and Dr. Luigi!  So cool! I framed it in my bedroom already!



Well, it is time for me to finally rest and prepare for tomorrow! I am exhausted from the traveling today and events of yesterday, but wanted to update everyone on this incredible experience!

Ps- I have a funny story about my trip today...They wouldn't let me through airport security at Miami international airport because they said I didn't look like the picture on my passport!!!!! We resolved the issue, but I guess that is a great testimony to the healing that continues to take place! Haha

Thanks for checking in! I will update again once I am back stateside :)

God bless!!

Love,
Jessica




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Tuesday, April 24, 2012

Meeting the First Lady!!!!!!!!!!!

**Please check out the FOX4 news report that aired last night!! Reporter Patrick Nolan did a fantastic job and I am really happy with the result! I can't believe tonight I will be meeting Michelle Obama!






I have REALLY amazing news to share!!

I received an amazing phone call yesterday!! The area code on my phone read “D.C USA” and on the other end of the line was a woman named Mabel, calling to invite me as an honorary guest to a special fundraising dinner, this Friday night, at a fancy hotel here in Naples--- to meet President Obama's wife-- Mrs. Michelle Obama!! 

I was so shocked and excited that I didn’t even know what to say.

We talked for a little while about RSD and my story, and Mabel said to me “I see your treatment took place in Monterrey, Mexico?” I said, “Yes. At Hospital San Jose Tec”—she proceeded to tell me that she was BORN in Monterrey—and at Hospital San Jose!!?!

Coincidence?! Definitely not!

I strongly believe God makes these types of connections for us and I am certain that He orchestrated this meeting! I am beyond grateful to have this chance to meet Michelle Obama and to have the opportunity to share with her my story, raise awareness, and hopefully help push toward my goal of insurance coverage and approval for using the ketamine treatments-- and coma-- here in the United States, so that so many who are suffering with this horrible illness can benefit too. I feel like my life was saved so that I can be the voice for many.

I will definitely update everyone and post some pictures as soon as possible!!

I am so excited!!!


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Wednesday, April 18, 2012

Airdate for channel 4 interview & Happy 21st Katherine!

Hi everyone!

As I mentioned, a few weeks ago Patrick Nolan, from FOX4 came to interview me about my journey, my treatment and my amazing recovery.

I just found out that it will be airing next Thursday (April 26th) at 10pm! So for everyone who is local in the Cape Coral/Ft.Myers/Naples area- please tune in and watch it! I hope it will raise a lot of awareness!

I believe they have a 'live feed' on their website as well-
http://www.fox4now.com/

I will definitely post a link to it here as soon as I have one!


Yesterday was a big day here in the Stevens’ household...

On April 17th, 21 years ago, my life changed dramatically—Katherine was born and I became a big sister! Though I have no actual recollection of that day, it was—hands down—one of the best days of my life.

Don't I just look SO happy?! :)

From the minute Katherine entered the world she has been a strong force in my life. Even though we annoyed each other and fought (a lot!), I know God knew just the type of sister I would need to help me through the hard times ahead….I never would have made it through the past few years without her humor and constant smile!

I feel extremely blessed to get to celebrate her special day and have her first 'legal' drink alongside her! Today and every day, I am so proud to call her my “little” sister.


HAPPY 21st BIRTHDAY KATHERINE!!



God bless!

Jessica


*Also, FOX/WSVN Miami’s “Jessica’s Journey” report is now on YouTube. I can’t believe my other one, “Counting on a Coma” has nearly 100,000 views!!*





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Thursday, April 5, 2012

Exciting news!!!!! & Happy Easter!!!

Hola!

I am sorry for the lack of updates on here! I’ve been very busy! I seriously don’t know where the times goes.

I feel like my new life at home is running at around 90mph!! My life in Mexico ran at about 10mph (sometimes much slower) … I think I am probably comfortable at around 40…so it’s been a HUGE change and adjustment for me (and my mom), everyday, just getting used to the craziness and chaos of home life.

However, it is a wonderful chaos and I am blessed to be able to keep up with everyone and all of the excitement that I am experiencing over every new thing I get to do!!

Like going out for ice cream!! Going shopping for the first time in 6 years!!

Going to the beach!!Watching the sunset!!

Another successful fundraiser was held in my honor at the Marco Lutheran Church by our wonderful friends, Nancy and Joe! It was a lot of fun to get to see and thank some of the people who made my recovery possible in person!

As I re-adjust to American life, Mexico is still very much a part of me (after all, I am Mexican after the many blood transfusions I had there ;) In everything I do and every moment of joy I experience I always carry Dr. Cantu and my Mexican family in my heart… I am reminded of them everyday, in various ways!

I even made the local paper!!

“Miracle in Mexico?”… Yes. Absolutely!

The response to my FOX TV “Jessica’s Journey” interview has been overwhelming and incredible!

*Watch it here: http://www.wsvn.com/features/articles/specialreport/MI94660/jessica-s-journey/ *

I’ve gotten so many emails and messages from others who are suffering, or have a family member who is, from organizations and foundations wanting me to speak at conferences, and even from doctors who are treating this disease in various ways, asking about my experiences.

Definitely, the most exciting email I received was from the producers at Good Morning America, saying that they had watched my story and were interested in doing an interview on GMA!!

We later spoke by phone and were told that they thought the story was too big for GMA, and that there were several producers who wanted to pursue a larger 1 hour primetime ‘medical mystery’ special!!

….On national TV!!!

This is something I never could have imagined doing, but something that I am very excited about because I know what a terrific opportunity this is to raise awareness of RSD , while sharing my story of hope, faith and miracles.

This is SO much more than just “my” story…. Some of the strongest and most amazing people I have met through this journey are my fellow warriors who are suffering in tremendous pain… this is their story too!

My prayer to God before going to Mexico was that if I made it through this treatment and recovered, I would use my experience to help others….

God was so faithful to his end of that deal, and it is my turn to hold up to my end by being the voice for us all! If through these interviews, I can do that, it will be an honor and great privilege.

It is my mission now to first and foremost raise awareness of RSD and to bring awareness both publicly and in the medical community of the use of ketamine in its treatment.

I will let everyone know where this leads once I have more details!

Also, yesterday I filmed a TV interview with Patrick Nolan from FOX Channel 4 (Cape Coral/Ft.Myers/Naples), it will be airing in a few weeks! I will keep everyone updated and post a link to it once it airs!

As long as God continues to open the doors for me to tell my story, I will continue to tell it.

Above all, this is the story of a mighty God who heals, restores and saves! I think now, especially at Easter, it is so important to take time to remember the huge sacrifice that was made for us all. He loves us more than we can even imagine and He always has a plan, as hard as it is to see at the time.

This Easter is my first one spent at home, with my family, healthy and not in a hospital in SIX YEARS! I plan to celebrate the day by doing what I love most--- LIVING!

I hope that everyone has a wonderful and very blessed and happy Easter!! Thanks for checking in!


In God’s amazing love,

Jessica


PS- Molly wishes everyone a very Happy Easter too!


Jesus had no servants, yet they called him Master…

He had no degrees, yet they called him Teacher…

He had no medicine, yet they called him Healer…

He had no army, yet kings feared Him…

He won no military battles, yet conquered the world…

He committed no crime, yet they crucified him…

He was buried in a tomb, yet he LIVES today!!


HAPPY EASTER EVERYONE!

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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!