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 illThe 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 lesionsJessica'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 campFour 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 rashDuring 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. KirkpatrickUpon 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!
8 comments:
Sarah Gina YOU are remarkable! Dr. Rainbow is so blessed to have you and Jessica in her life, as you her!! Your wish poem will touch so many lives today and bring healing to hearts and prayers answered from your love.
What wonderful news that Jessica's left leg is shaking up a storm!! I think that the RSD is moving out of Jessica's left leg and into the right so that it can move out of her body through the original entry place. That's my prayer for today. Release that "Bad Boy Bug".
As the pain leaves... Jessica's eyes will light up with clear vision of where her wonderful missionary life is headed.
With love and gratitude,
Nancy
Good morning Jessica and Gina,
Rainbows and butterflies have always been a part of my life. Both signify "new life" and kept promises. I have a perpetual calendar on my wall with a painting of Noah and the ark and the rainbow and above it is written "God Keeps His Promises." God will keep his promise to bring healing to you both. And remember that caterpillar that makes a safe wrapping around her and in time emerges as a beautiful butterfly with a new life. I feel that Jessica is in that wrapping now, and in time will emerge in her new life as a beautiful butterfly.
A very Happy Birthday to Dr. Rainbow! Thank you for all you have done for Jessica and Gina.
God's blessings on you all.
Madelon
Happy Birthday, Doctor Rainbow! I thank God for you, that you have touched Sarah and Jessica's lives. God Bless You! I am so happy to hear that Jessica is able to move her left leg. How is her vision? I have been praying that her vision will be restored :) How is Justin? Crystal Ulmer
Please give my best birthday wishes to Dr. Zabalas (Dr. Rainbow). I enjoyed getting to know her while I was there, as well. I am certain you will bring tears to her eyes when you present her with the bear. It is amazing how God places just the right people in our path when we need them. He is an amazing God!
I thank God that Jessica is at least seeing some small improvements. I am sure that brings the whole family great joy even though the road continues to be an uphill battle.
Please keep on posting as it helps to direct my prayers for you. Both in thankfulness and in petition.
Last night we had a very big rain and wind storm. We had put out our recycling for collection by the city today and so I wondered what mess would be there for a family member to have to clean up on the way to school and/or work. Amazingly, though many tree branches had come down, and the wind was very great, the boxes held firm. It made me think of when we are being battled around in a storm. We hang onto the knowledge and hope of what is true and right and though we are pummeled we stand firm. May you feel firmly planted and strengthened today. Your day will come when you walk out of there as a winner and having learned so much more than anyone could have ever taught. You will be a leader and a motivator! as you already are to so many. Keep smiling!
God be with you today,
Fern
Hello Jessica and family, Hope this finds you much improved and feeling great! My name is Linda Gordon. I attend First Baptist Church of Naples and am praying for you daily since my friend Sara(who also has Lyme disease)told me about you. My husband and I are opening a new soundwave therapy business in Naples. Our friend Sara is going to be our first client. The Lyme seems to have attacked her nervous system for the most part. We have another friend in Michigan who is also stricken with this relentless disease. She is now blind in one eye and almost blind in the other, so we know of the many devastating affects it can have. That is why I felt compelled to write, now that we are close to having this therapy available right here in Naples. Before you discount this, please go to the website at medsonix.info, it will give you a little background info on what this is. You can also check us out on You Tube. We do not claim to heal or cure anyone or any disease, but there is an 86% success rate with alleviating pain and symptoms of many different illnesses and disorders. Lyme disease, MS, diabetes, cardiovascular disease, blood disorders, arthritis, and many more. It has been shown to improve the quality of life of some individuals in the case of Lyme disease. I know you have explored many things at great expense and are actually still in Mexico. If that works, then I say, "Praise God," however when you return if there are still symptoms or if they should return, please consider this. Medsonix has been in the testing and research stages for several years and was recently given a class one medical device rating by the FDA. It is totally non invasive, drugless, painless, therapy, with NO negative side affects and no drug interactions. Even people with pacemakers can safely use Medsonix. We welcome any questions you may have and hope that we may have the opportunity to help Jessica if she is still in need. We would like to offer the initial round of therapy, 2 sessions every day for 2 weeks, at no charge. Most situations, other than Lyme only require 1-4 sessions over a 30 day period, however with Lyme disease it has been shown in some individuals, that a more aggressive approach causes the symptoms to hibernate for approximately 7 wks. Maintenance of 2 sessions/day for 4 days seems to keep it at bay for about a 7 wk. period. The therapy center is scheduled to be in operation by the first or second week in December 2009. Please email us back if you have any interest after checking out the website. Email swhsnaples@aol.com (SoundWave Health Solutions)
Hi Jessica and Gina
Praise God that you are now able to shake your left leg and touch it without pain. That is remarkable and I'm sure has lifted your spirits.
God continues to watch over you and my prayer for you today is that there may be improvement in your right leg.
Gina, I saw the bear you made for Pastor Browning and I love it. What a special gift you can give to the people who are in your life.
Happy Birthday to Dr Rainbow.
Love,
Jenn
We thank God for the continued improvements! Wonderful news!
We will keep praying that He will heal your sweet Jessica!
With love & prayers,
The Turners
Good morning Jessica and Gina,
It is Wednesday morning and a gorgeous fall day here on Long Island. My job is on the north shore, so I enjoy a beautiful drive looking at God's beautiful display of the fall colors. And although we know that eventually all those beautiful colors will fall to the ground and leave the branches bare, there is the faith that the leaves will return in the spring in radiant greens. I pray that your life, Jessica becomes vibrant again with new "growth." God's blessings on you both.
Madelon
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