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!
12 comments:
I sweetie!! I miss you. I hope you are feeling a little bit better today. I can't wait to see this necklace that I have heard so much about!!
I think of you and your family every day.
Love you!!!
continued love and support from Saratoga. We hope to get to Long Island and see the necklaces.
Linda
Hi Jessica and Gina
How exciting that the necklace is going to be launched on Saturday. That's great and I can't wait to see it.
I am praying that the nerve block helps your right leg. I continue to receive something along those lines for my headaches (I have radio frequency on the nerves in the cervical area every four months)...it definitely helps my headache pain and I pray that this nerve block helps you.
My children now ask me everyday how Jessica is. They are twins (boy/girl) almost 11 and know that I check your site daily. So know that myself and Tay and Tristen are praying for you from New York.
God Bless,
Jenn
Hi This is Isabel Klatt i am Genevieve Klatts sister. I will keep Jessica in my prayers and hope she gets better as fast as she can. I hope she gets better everyday and i hope she knows how much everyone cares and loves her. Mrs. Stevens i would like to say that Michelle is such a nice and fun girl. Im so glad that my sister is friends with her. Have a wonderful week and i will write soon!
Love, Isabel Klatt
Hang in there gals,you are both the strongest gals I know of.You fight soooo hard evey day & I admire you both very much.I pray for Jessica to be released of her pain every day!!! Please God help Jessica for she has been through so much!!We all need her to be healed so she can go on to her dream life now.Please hear & answer our prayers!!
Amen,
Jodi
Hi girls...I'm with Jodi...we have a prayer circle going all around the world!
I can hear God now..."I hear you all, and I have wonderful plans for our dear Jessica. Just wait and SEE"!
Thank you God, we are grateful!
Nanc
Hello Gina, This is the first time I have logged on to your site. I think of you both often & pray for a full recovery. You have a wonderful group here at Resurrection hoping for the best for Jessica and your family. Stay strong, Nancy M.
Have you seen Dr. Kirkpatrick's new website?
http://rsdhealthcare.org/index.html
Hello!
My name is Melisa Luna, I also have lyme disease but I was fortunate enough to not have gotten lyme as bad as Jessica. I met her through an online support group and she gave me a list of doctors in the US that deal with lyme. I'm a senior social work major doing a social advocacy project and as a victim of lyme I'm choosing to educate others about the disease. I have a few questions I would like to ask you if you could email me please at ml77549@appstate.edu. I would like to help you and Jessica! =) If you could email today or tomorrow that would be wonderful! I hope all is well as can be with you guys, you're always in my thoughts <3
~Melisa Luna
ML77549(not sure if you could tell the second letter). thanks! =)
Isaiah 40:31
... but those who hope in the LORD will renew their strength.
They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
May God renew your strength as you wait on Him and His perfect timing.
With love & prayers,
The Turners
Hi Jessica and Gina. Sorry you haven't heard from me. Really busy but always thinking of you. Here's a great thanksgiving quote....It is delightfully easy to thank God for the grace we ourselves have recieved but it requires great grace to thank God for the grace given to others. Happy turkey day hope to see you home soon. Bonnie
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