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!
7 comments:
Hi Jessica and Sara Gina, We are praying every day and night for you.You are in our thoughts and prayers every moment and we know that with your strength and determination and with Mom at your side along with all the wonderful doctors,friends,family,God--keep the faith. Have only sweet dreams and joy of recovery .
Just thinking of you......Crystal
hi, jessica! i'm delighted to read you're moving your leg more and you can touch it without pain. celebrate the small victories! we have to hold on to the positive. i know you'll fight off this infection and as well as rsd.
my parents were in san diego over the weekend for a wedding. my husband, daughter and myself packed up the car and had our first road trip in years! it was a quick visit, filled with laughter, love, faith and thoughts of you and devon. you are constantly in our paryers. keep the faith, jessica. God is so very good and you too will have your miracle in monterrey.
love and blessings,
emily wilford
Hi Jessica and Mrs. Stevens,
I thought of you guys as I heard a song this week on the radio. The song is called "He is" by Mark Schultz. I had used it this week for my update and it reminded me a lot of what you were saying in your post. God does have a plan. Revelations says "I am the Alpha and the Omega," says the Lord God, "who is, and who was, and who is to come, the Almighty." When our word seems to be spiraling out of control, it is so comforting to know that God IS. He WAS. And he ALWAYS will be. That is the basis of this song. My prayer for you and Jessica is to feel today, right now in Mexico, that you will feel his presence and to know that he is with you and he IS...
Here is the link if you want to check out the song:
http://www.youtube.com/watch?v=i1dElIkD3hU
He IS by Mark Schutlz
Father, let the world just fade away
Let me feel your presence in this place
Lord, I've never been so weary
How I need to know you're near me
Father, let the world just fade away
Till I'm on my knees
Till my heart can sing
He is
He was
He always will be
Even when it feels like there is no one holding me
Be still, my soul
He is
Father, let your Holy Spirit sing
Let it calm the storm inside of me
As I stand amazed
Lift my hands and say
He is
He was
He always will be
[ Mark Schultz Lyrics are found on www.songlyrics.com ]
He lives
He loves
he's always with me
Even when it feels like there is no one holding me
Be still, my soul
Through every fear
And every doubt
And every tear I shed
Down every road
I'm not alone
No matter where I am
He is
He was
And He always will be
He lives
He loves
he's always with me
Even when it feels like there is no one holding me
Be still, my soul
Be still, and know
Be still, my soul
He is
Love you guys,
Lindsay Spengler
prayers
Linda in Saratoga
please let us know if there are any more fund raisers on Long Island.
prayers
Linda in Saratoga
please let us know if there are any more fund raisers on Long Island.
hi jessica, it is michelle i just wanted to say hi and that i miss you..i also wrote you a poem in creative writing...
JESSICA
my loving caring sister-
2 years old...
i couldn't say jessica
i called her wessie
she is pretty-
brown hair
green eyes
a bright smile
a warm heart
she sometimes gets on my nerves
the BIG sister
getting attention
born first
the favorite
she is my best friend
hide and seek
board games
i love her because..
she is my sister
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