Hi to our family & friends,
Once again we ask for special prayers today as the specialist ( a neuro-opthomalogist) comes back to the hospital this afternoon to perform tests on Jessica's eyes. She will be put under with proporfol in a semi-conscious state so that the doctor can be able to use the lights he needs to see behind her eyes. This condition of "static vision" or "visual snow" has been plaguing Jessica and not improving. I try to reassure that all will be well and her eyesight will return to normal, and the doctors are trying to reassure me as well. I will feel better though, after the tests are performed and we have a diagnosis. Is the visual snow or static vision coming from the eyes or is it coming from the brain? I will keep you posted. Pray for Jessica today, as her eyesight is very important and the problem needs to be figured out!
All my love,
Sarah Gina
(Jessica's Mom)
ALSO: REMINDER:
Tomorrow - October 3rd - Fundraiser for Jessica in Naples, Fl.
@ Fred's Diner - 2900 Immokalee Road - Dinner/Music/Raffles
RSVP- ASAP- Last call to Nancy @ (239)431-7928 or e-mail her @
uareworthit@aol.com Please support "Team Jessica" for all their
hard work in getting this fundraiser organized!!
***To post a comment - CLICK on comments below***
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:
My God restore Jessica's vision to perfect so she can enjoy the beauty of his world! Especially the beautiful face of the one who stands by her side...Mom!
I remember Jessica saying when she was first out of the coma and did not have her memory back yet, "I don't know who you are... but you say you're my Mom... and you take such good care of me... and I love you!" That makes a bunch of us Sarah Gina!!
Happy New Vision Day!!
Nancy
Hi Sarah Gina just wanted to touch base with you before tomorrow, I probably won't be on the computer with preperations for the fundraiser. So far we are heading towards 70 confirmed reservations, of course we hope we will gets lots of walk-ins too. I think it will be a good turn out and hope you will be able to login to the live webstream website to watch. I was having a bad day until I started reading your blog and realized my problems aren't so big. You are all in our prayers and tell Jessica Fred's Mom said hello and to get better soon so she can bring Molly and dine on our patio. Love Kathy
Wish I had some great words of wisdom but I don't. May God be at your side to carry you through this difficult time.
Love from Saratoga,
Linda Maitan
Hi Jessica and Gina, Our prayers go out to you and to the neuro-opthalmologist, that he is guided by God to find the answers that you need. Jessica is the first intention in our rosary now, and people are already making donations toward the fundraiser at the Fire Department next Saturday. So many people are praying for you, Jessica and Gina, and David, Katherine, and Michelle as well. We are walking this road by your side as much as we can. Lean on us for support. We are all here for you. Hang in there, beautiful ladies!! Sending you online love and hugs, Angel xoxo
Gina and Jessica. Our thoughts and prayers are with you every day. We will be sure to light a candle for the both of you this Sunday.
Gina you are such an amazing mother; Jessica has been truly blessed to have you fighting so hard for her!
We will keep praying for strength and an end to this long, hard journey. We hope today went well and the answers are ones you wanted to hear.
We can't wait to see you all at Pat and Fred's house again; happy and healthy with this behind you.
Fondly,
Karen, Dan, Michael, Nicholas, Daniel, Brianna and Julianna Ventricelli
Good Morning Sunshine! Today is actually Saturday, Oct 3 - the day of YOUR big party, Jessica! The fundraiser at Fred's Diner! We, that is - Team Jessica - are all so excited for you! Everyone in the Naples area has been so very generous, Jessica, and it is all for you! There are thousands of people praying for you and sending you love. We have been introduced to the most amazing people as we prepared for today's fundraiser. God led us to the right people, and those people felt they just couldn't do enough for you. Like how Team Jessica feels about you!
Stay hopeful, Jessica. Hope is a gift from God. Hold on tight. We all love you.
I pray for the day that Molly can run to you and jump into your waiting arms; then do her special dance for you so you will laugh!
God Bless you, Jessica, for your strength, endurance and for always clinging to your Faith in God. And God Bless your very special Mom, Dad and Sisters. Their hearts are filled with love for you. God Bless your doctors and nurses, that their hands and minds be guided by God toward your healing. God Bless everyone that holds you up in their daily prayers, asking God for your returned health and vigor.
We all love you, Jessica. You have brought an entire community together and have brought out the best in all of us. You are already being the doctor you desire to someday be. You've healed our community, Jessica.
Today is YOUR special day! The fundraiser at Fred's will be filled with love for you and prayers for your full recovery!
Love, Joanne
My prayers are with Jessica and her family for her recovery. A friend of mine is working with the doctors on this project and has kept us updated.
With such a wonderful team of specialists, a loving family and prayers from us all, I'm confident Jessica will be home and thriving in a new pain-free, healthy life.
Wishing you the best of luck.
Saludos,
Carole
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