Friday, October 9, 2009

Jessica Tells Her Story - "COUNTING ON A COMA"

Hi everyone,


Once again, our sweet Jessica has amazed me!!! When I was finally able to view the video of her story on Fox News-Ch.7-Miami ( I was so proud of her for sharing her story about her battle with RSD,(and Lyme), the unbearable pain it causes, and her "journey" into the ketamine coma study for a better life, free of pain and sickness. Dr. Kirkpatrick, Dr. Cantu and all the doctors here are so proud of her for allowing the world to share with her this most private battle that she has had to endure! As they have said to her: "Jessica, by telling your story for the whole world to see and hear, you are helping so many other people and raising awareness for this terrible disease called RSD - Reflex Sympathetic Dystrophy- We are ALL so proud of you!!!" We, as a family, could not be more proud indeed!!! God does indeed have a plan for Jessica; one that does not include her being bedridden and unable to walk, and suffering with unrelenting pain - of this I am certain!!!

I would personally like to thank Angela Caraway, the producer of the story. She came to Dr. Kirkpatrick's office and interviewed Jessica and I. She and Joey, the cameraman, were so compassionate and I knew then that God was with us that day and the story would be told in the best way possible for Jessica! I would also like to thank all involved at Fox News -Miami-Ch 7, for a beautifully told & edited piece that I am sure will win the Emmy it was submitted for!!!

Words cannot express how it is to see your daughters story told on TV. It almost seems surreal. Is this really happening? Yes, it is, and not only to us but many others! Is it difficult? Yes. Do you want it all to just go away? Yes! But, I must say this: the human spirit is alive and well here in Mexico!!! First, it is evident in Jessica, who struggles here everyday to make it back to a "normal" life. It is evident in Devon, our fellow american who is here fighting her own personal battle with RSD. It is evident in the doctors, like Dr. Cantu, Dr. Zavala, Dr. Ramirez, Dr. Barrientes, Dr. Castilleja, Dr. Ramos, Dr. Cynthia, who are all here trying to help the coma patients, and also, it is evident in you ALL!!!
From the wonderful people here in Mexico who help us everyday, to all the people in Naples, Fl., who helped with the fundraiser, to all the people in Garden City, N.Y who are helping with the fundraiser there this Saturday, all of our family, friends, and complete strangers who pray and send comments everyday to us - THANK YOU ALL - from the bottom of our hearts - We Love You All!!!


All my love,
One "Proud" Mom
Sarah Gina
One "Proud" Dad
Two "Proud" Sisters
Katherine & Michelle
Two "Proud" dogs
Molly & Chloe

****To post a Comment, CLICK on Comments below****


Anonymous said...

Wow,this is a big moment!!Sarah Gina,I look forward to your blogs every day.You have a way with words & express yourself openly. I thank you for all that,I'm sure some days you don't feel like writing but you do it all for the love of Jessica!! SO POWERFUL!!
How are her eyes,any results from the test? Praying for you daily!
Peace, Jodi Naples XOX

Anonymous said...

I had just heard about Jessica yesterday when I caught the news. It was really impacting and I'm sure for millions who saw it too. I logged in today to your blog and have to say you are amazing to have the strenghth to keep us all informed of Jessicas progress. Yes love is very powerful. I am speechless. Jessica, you and your family are and will be in our prayers.
Denise in Miami

Nancy said...

All this and more...AMEN!!!!

thomas said...

just watched the channel 7 news broadcast and your story. dont sweat the complications. just as your memory returned in time, so too shall any other problems you may experience be overcome. people care.......

Anonymous said...

Dear "Mom" and Jessica, I can't tell you enough how much my and my family's heart goes out to you. First I want to start by telling anyone out there that what they saw on the news was not a dramatization! No news report can capture the horror that Jessica and her family are going through.

Jessica, my name is also Jessica; I am Devon's cousin from Virginia. I have never met you, but feel like I know you and your family through my aunt Cathy and Devon herself. Please know that you are in my thoughts and prayers!! If there is anything you need please don't hesatate to ask. I will continue to ask about you to my family and will pray for your vision. I am sure my aunt has told you that I lost my vision in a car accident when I was nine. I know you must be scared, but you are NOT alone!!
Your Sister in Christ,

Sandra Guzman said...

Hi Jessica and Gina!!! I totally saw your story last night on the news, as you know I do live in the South Florida area. Needless to say,I had to wipe my eyes a few times...and you know what? So did Ryan. I am so proud of you Jessica for sharing your story. You are truly amazing!!! Gina, I'm pretty sure Jessica wouldn't be the fighter she is if not for you!!! I love you both and your family and you are always in my prayers...

Cousin Regina said...

I am very proud of all of you and the fighting spirit and faith that is evident in our family. I think of our parents who helped us become strong and I encourage you all to keep relying on that strength! Love and hugs to you all in Mexico and Garden City, NY! My prayers stay with you all the time!

Pam said...

My Dad, Ed and I watched Jessica's video. It was very well done. Jessica, through her pain, gave the world-at-large an insight into this insidious affliction. No one can ever convey the magnitude of this pain though, can they. It is beyond the power of words to describe. I have passed the link on to my friends and family who have been following our journey with Devon. They all know about Jessica through my daily writings during my two stints in Monterrey. Tell her that she has a large fan club up here in Boston pulling for her! I am in awe of her (and you). I think of you both every day. Stay strong. love, Pam

Anonymous said...

My name is Suzie Hyatt. I am coma patient #5 from Mexico. Your FOX news clip was amazing. If anyone can get the word out about RSD and lyme disease it is you. FOX 13 in Tampa did the story on me two years ago and I knew if it could help just one person with RSD that was enough justification for doing it. Later that year it was nominated for an Emmy award. I am sure your news story will be heard around the world and nominated too. So, thanks for opening the door to helping others.

You are in our thoughts and daily prayers.

Suzie Hyatt
Sarasota, Fl

Anonymous said...

Hi Jessica and Sarah,
You are 2 very amazing people. I pray for you both daily and know that Jessica will feel all the benefits of Ketamine soon. I hope that you feel all the love that people are sending you. Cathy, Devon's mom, keeps us in the loop regarding Devon and Jessica and their ups and downs. Glad to know of this blog and will check in daily. Hugs to all.
Would love to do a "fans of Jessica" poster for her room.

Anonymous said...

dear Jessica,

I cannot begin to know the pain and torment you have been through. As you know first hand, this disease should be thrust on no one. You may know my neice, Devon, who is down in Mexico with you. If not, you moms have met, waiting for your recoveries so you might be happy again.

know you and Dev are both in my prayers, hoping you will be well once more. Hang in there. I know so many are praying for you.

Kathy Collins

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Anonymous said...

The writer of has written a superior article. I got your point and there is nothing to argue about. It is like the following universal truth that you can not disagree with: truth is always truthing itself with every new thought or creation I will be back.

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!