Hi to all our family & friends,
Update on Jessica: Her body is still struggling with the effects of the medication that she couldn't tolerate. Sometimes the body expels the med more quickly than others and even when it does, you still have to wait for the lasting effects to subside. It's been a tough week, so keep praying for her. Ketamine infusions will resume as soon as she is able to do them!
THE FOLLOWING FUNDRAISING EVENTS ARE UPCOMING:
IN, NAPLES, FLORIDA:
Jessica's Journey Fundraiser
Sat. Oct. 3rd...6-9 PM
2900 Immokalee Rd. Naples,Fl.
*There will be a 3-course dinner/Live music/Raffles!!!
Donations: Sun Trust Bank-Jessica's Journey Savings Club
Acct. #1000101117702 or mail ck to:
Carol Biron-14505 Indigo Lakes Circle
Naples, Fl. 34119
***SPECIAL THANKS go out to Nancy & Joe Sustersic and Carol & Ray Biron, along with "Team Jessica" for their tireless efforts in arranging this and upcoming events as well. Words cannot express how grateful we are to call them our friends, but they are more like "family" to us!!! They have also ordered special bracelets to be sold as well, that say RSD Awareness on one side and Jessica's Journey on the other! Jessica is so appreciative and thankful as well!!! Any questions, please e-mail Nancy @ email@example.com.
IN GARDEN CITY, N.Y.:
Garden City Fire Dep't,
Garden City, N.Y. 11530
***Lucky Lotto Drawing***
Each Day in Dec. - the winning ticket number will be based on the 3-digit N.Y. lotto evening drawing, and the winning prize will be $50; a $100 prize on Sundays and Christmas.
The Department will also be holding a fundraiser Happy Hour at the firehouse. This date will be announced shortly. They will ask for a $20 donation at the door and a 50/50 raffle will be held.
***SPECIAL THANKS to Chief Bill Graham for getting the fire dep't, involved and to 2nd Asst. Bill Castoro for doing all the work needed to get this off the ground! Also, special thanks to Marianne Quinn, wife of firefighter Larry Quinn. It was her idea to hold the fund drive for Jessica. Any questions, please e-mail Chief Castoro @Bcastoro@gcfdny.com.
As most of you know, my husband is a volunteer firefighter with the GCFD. They were there for us back in 2003 when he was very ill and they are once again here to help us now that Jessica is so ill. It is indeed a "brotherhood" and we appreciate all that they are doing to help defray some of the medical costs for this experimental treatment.
And now some special words from a grateful Mom & family:
You don't realize or can't even imagine what your life is like when you have a child who is ill and suffering. As a Mom, you want to make it all better, you want to take the hurt or "booboo" away, and sometimes you can't and it is so hard! Your immediate family is always there for you and help in so many ways! But, it is with special people like our friends in Naples, Fl. and the "brotherhood" of firefighters in Garden City, N.Y. that help us to know that we do have many other people surrounding us with their love and compassion. People from our church as well as other churches that are helping. People that are willing to stand by you no matter what, people that were once friends and now have become our family; it really humbles me and takes my breath away! So special thanks to all of you, it does not go unnoticed and we love you so!!!
***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!
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.
The 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 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.
Four 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.
If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!
During 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.
Upon 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!