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!
9 comments:
Good morning Jessica and Gina from Long Island,
It poured last night, but this morning the clouds are parting and promises to be a beautiful, sunny day with temperatures in the 60's. That is how life is...one day cloudy, dark, rainy and then the next is sunny and beautiful. It makes me appreciate the sunny days even more. I know that you have both endured your rainy, cloudy and dark days, but also your sunny days in this journey. I pray for more sunny days for you, both! I pray for God's miracle to relieve you, Jessica of the physical pain, to be able to enjoy life to its fullest. And Gina, I wish God's miracle of giving you the peace and joy that Jessica is healed through God because you are also suffering through Jessica's pain. Gina, you are a very special Mom and I pray for God to continue to give you the strength to continue on this journey with Jessica. I admire your faith.
I wish you a day full of God's miracles no matter how small they might be. The Lord is smiling upon you both.
God's blessings, Madelon
Thanks Gina, for being so faithful with the updates. I check each day in the hopes of hearing that there has been small improvements and to gauge how you are all doing. Has Devon gone home now? I updated my blog yesterday and asked the readers of it to again hold you all up in prayer. I will send you an email link to the blog in case you are interested.
3 months! What a milestone. Keep fighting Jessica, we can all win this one and I know that you have such amazing people rallying around you. May you feel their inner strength, their hopes and prayers for you and for your life to be given back to you in a strong and energized way. You teach us all each day about perseverance and patience.
God be with you all!
Fern
Hi Jessica
Your journey began almost four years ago. someone once told me that I needed to look at my illness like a marathon - I'm running the marathon and when I get to the 22nd mile, things begin to get tough. You are at the 22nd mile Jessica and you will pass the 22nd mile and finish your marathon. Your strength, courage and faith is what continues to help you run, jump hurdles and do what you need to do to get better.
May God be with you as you continue to fight this battle. May God be with your mom, your family and all of the doctors that are caring for you.
You remain in my prayers and heart.
Jenn
"Be still and know that I am God"
Even though I do not always leave a comment, you are in my thoughts and prayers. Jessica, God has a plan for you! Crystal
Dear Jessica and Gina,
I came across this quote and I thought of you. "There is nothing that makes us love someone so much as praying for them." William Law
There are many people praying for you and sending love to both of you. God is hearing all of us.
Blessings to you,
Linda Wardley
Wow!!! What a donation!!! It is so wonderful to see how people can bond together and help someone in need!! The Klatt family and the employees at Credit Suisse in NY should be commended for a job well done! May God bless you all for your wonderful outpouring of love!!!
Dear Gina and Jessica --
I check your blog everyday and often after reading your update I find myself re-reading your words, over and over again. With every sentence you write there is an overwhelming sense of love and inspiration that comes through.
Today Wayne and I would like to thank you for your most beautiful words of thanks to our family and the employees at Credit Suisse Equity Department. Wayne shared Jessica's story with his co-workers and the rest is history . . . they are amazing people who were so generous with their donations as well as their sincere wishes for Jessica's healthy return back home!
We are on "Team Jessica" for the long haul and will be here to help in any way we can!
With love and warmest wishes to you both,
Renee
Good morning Jessica and Gina,
We all know that prayers are answered by God and I know that God answered our prayers for help. Although prayers and love are precious to give, our society depends upon money to buy the "things." Therefore, I want to say a special "thank you" to the Klatt Family for not only giving you their love and support in this difficult time, but for asking others to help financially to support Jessica's Journey.
Another sunny and beautiful day here in GC...hope that your day is sunny, too and promises to be a special day with God's love and help.
God's blessings to you both.
Madelon
Thanks :)
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