Jessica's Journey: HAPPY 24th BIRTHDAY JESSICA !!!

Sunday, January 15, 2012

HAPPY 24th BIRTHDAY JESSICA !!!

Dearest Jessica,

Today is your birthday! 24 years old!

HAPPY BIRTHDAY!!! FELIZ CUMPLEANOS!!!

How do I even begin to tell you how I feel in my heart about you? I have truly been blessed by God to have you as my daughter and to be called your Mom!

It is often said that the journey of a thousand miles begins with one step....and oh, how true that saying is for what you have endured these past years. You have taken many "steps"--- sometimes forward, most times backward, some small, some big, most hard and some unimaginable! But through it all, you have shown to me and all who have come to know you, how truly strong, courageous, special, and amazing you are!

I remember many years ago, before you were born, how I couldn't wait to meet you. When God blessed me with you I was the happiest person in the world. You were my little bit of heaven, my little Angel, sent from God above! The love I felt for you was overflowing, just like the water in the sea. I never imagined that I could feel so much love.

Through the years, you have never ceased to amaze me. These past few years you have been nothing short of incredible---I stand in awe of YOU!

As I sit here writing this special letter to you this year, we are finally blessed to be back "home". Home here in Florida, with your Dad, sisters, grandmother, aunts, uncles, cousins and friends. God continues to bless us in so many ways. You see, in this "journey" that we have been taking, we have had to call many places "home", as I think of where we were last year at this time and Mexico was our home away from home.

But in each and every place we have journeyed, you have shown to everyone what "strength under fire" is. What you have had to endure, no one should ever have to in their lifetime, let alone in just a few years! Your tenacity and belief in a God that would be there with you every "step" of the way, was just incredible. You are a living example of what unwavering faith in God, hope in a brighter tomorrow, and unconditional love is all about!

My prayer for you this year is for you to experience all that you have missed in the years that you have been ill. I want you to have all the things you couldn't have or even do because of the pain that robbed you of a life you should have had; the life that God originally intended it to be.

Jessica, you are and have been ALL that I have ever wanted in a child! You have taught me a greater love and it is you that gives me a special reason to wake up each morning. You are my sunshine on a dark day and your smile brightens up every room you are in! I promise you that I will help you to see the world that you have missed during your illnesses and that I will always be there to hold your hand as you face each new day, just as my Mom, your Grandma, did for me.

So Jessica please even though we know that the world isn't perfect, and that you may "fall" from time to time, do not worry because I will always be there to "pick you up" forever and always.....

I love you very much and I am so proud to be called your Mom and honored to take this journey, step by step, with you. Remember, small steps---huge advances, as Dr. Cantu always says!

Happy 24th Birthday Jessica! From the very first, I have admired you, enjoyed and been so proud of you. And as the years go by, my love for you only grows deeper - my honest, amazing, inspring, truly original daughter! May God continue to bless your "steps" and keep you safe and warm and may you finally be able to enjoy your "new" life!

All my love, always,
Your Mom Sarita xo

Numbers 6:24-26
The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you; the Lord turn His face toward you and give you peace.

***To Post A Comment, CLICK on Comments Below***

10 comments:

Rosemary and John said...: Dear Jessica,

Happy, Blessed and Healthy 24'th Birthday!

You've come a long way baby, longer than anyone ever dreamed or imagined you would come. God has truly blessed you and answered so many prayers.

We are always inspired and always in awe of your courage and ability to see the positive while in your darkest of hours.

May this new year be the beginning of your being able to recapture lost times and to create new and happy memories with all whom you love.

Happy Birthday Jessica! We love you and will continue to pray every day for your healing until you once again can run in meadows and realize your every dream.

Love always and forever,

Rosemary, John and Papa
xoxoxoox; January 15, 2012 at 8:43 AM
Jaxx said...: Happy Birthday Jessica, hope it is a special one, which I am sure it will be :); January 15, 2012 at 1:38 PM
not a minx, a moron, or a parasite said...: HAPPY BIRTHDAY,JESSICA! May God shower you with blessings.; January 15, 2012 at 5:23 PM
Fern said...: A beautiful letter from a mother to her cherished child. Happy birthday, Jessica. May blessings abound!; January 15, 2012 at 11:08 PM
Anonymous said...: Happy Birthday to You,
Happy Birthday to You,
Happy Birthday dear Jessica!!
Happy Birthday to You!!!!!!!

Dear Jessica, Happy 24th Birthday!!! I hope it was a great one, filled with hugs and laughter and visits and cake and all those most special things!!! The biggest gift of all is being able to be together and be HOME!!! Say hi to your family for me!!! Love always, Angel xoxoxoxo; January 16, 2012 at 11:35 PM
Marianne E. Quinn said...: Dear Jessica,

Happy 24th Birthday!!

May your Special Celebrate Your Life Day and Your Year Ahead be filled with Great Health, Happiness, and Memory Making Moments with Those You Love! God Bless You Always! Cheers and Here's To You!

Happy Birthday Jessica!!!

With Love and Prayers,
Marianne; January 17, 2012 at 10:52 AM
Anonymous said...: Dear Jessica,

HAPPY BIRTHDAY TO THE ONE & ONLY AMAZING, WONDERFUL YOU!

We hope you had a fantastic day and cannot thank your Mom enough for sharing your birthday letter with us . . . I do not believe we have ever read anything more beautiful.

May all your dreams come true and may every wish be yours. Your adventure has just begun & we will all be here waiting to read your next chapter. YOU GO GIRL!!

With our love,
Your biggest fans . . . The Klaus; January 17, 2012 at 8:05 PM
Jeanie Moran said...: Happy Birthday Jessica and welcome home. I'm so happy and inspired by you amazing strength and faith. Seeing the pictures of you all together are so wonderful. Thank you for sharing them. All the best to you, your mom, dad and sisters.

with love from your huntington rd neighbors...Jeanie, James, Jillian and Matthew Moran.; January 22, 2012 at 2:58 PM
Anonymous said...: Hello Jessica,
Came across your story purely by accident and felt I had to send a message to you to let you know that I think we are all bound by the same human spirit that makes us at the same time admire and draw strength from each other. Perhaps without knowing it, you and your family are an inspiration to others. Very best wishes for your return to health and thanks for sharing your story.
Julie x; January 25, 2012 at 12:55 AM
Anonymous said...: Dear Jessica,
I also came across your story by accident.Your strength and perserverance is truly a "Gift from God." Thank God ,your enjoying your family & the life God intended for you.Thank you for sharing this beautiful story giving us all hope in God's will.
God Bless,
Grma Kate; January 28, 2012 at 10:08 PM

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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!

What is RSD?

Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire...

Reflex Sympathetic Dystrophy (RSD) is a painful & debilitating chronic neurological disorder that occurs when the nervous system malfunctions in response to a injury or illness- in Jessica's case- Lyme disease.

RSD is characterized by: Continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis.

This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it.

Ketamine Coma Study

The Ketamine Coma Study is a clinical trial procedure being conducted in both Germany and Mexico, that is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.

During this procedure, patients are put into a ketamine-induced coma-- essentially shutting the body down & giving it time to "reset" the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.

So far, only about 100 patients have taken part in the study. For many, it has been miraculous!
However, like any treatment, there are no guarantees. There are also significant risks, especially in Jessica's fragile condition.

The Ketamine Coma shows great promise as a treatment for severe RSD- the key is going to be more research.

What is Ketamine?

Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals.

There are currently three kinds of ketamine treatments: The Awake technique (continuous low dosage for 4-5 days), the Outpatient low-dose infusion (4-5 hours a day for two weeks, then gradually-lower doses), and the Coma technique (continuous high dosage for about a week).

The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and "reboots" the patient's brain, much like a computer.

Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness.

Why Mexico?

There is a popular misconception that medical care in Mexico is of inferior quality. However, this is not (always) the case. In fact, many facilities in Mexico are state of the art, with top notch care.

Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries.

Jessica's doctor, Dr. Anthony Kirkpatrick, is one of only a few specialists involved with this study in the U.S. He has teamed up with Dr. Fernando Cantu and his team in Mexico to perform the Ketamine Coma.