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
Fred's Diner
2900 Immokalee Rd. Naples,Fl.
RSVP..(239)431-7928
*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 @ uareworthit@aol.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!
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!
10 comments:
Dear Jessica,
Hang in there, God has a plan for you. "FEAR" is False Evidence That Appears Real. FEAR is created by the devil in hopes that we will doubt Our Heavenly Father's Plan. The difficulties you face will not be permanent, God loves you!
Crystal Ulmer
Psalm 91. Based on Gods word - if we make Him are Lord and savior no trial shall overcome us !
When reading it you can personalize it by substituting the word YOU with your name or whoever's.
^1 He who dwells in the shelter of the Most High
will rest in the shadow of the Almighty.
^2 I will say of the LORD, "He is my refuge and my fortress,
my God, in whom I trust."
^3 Surely he will save you from the fowler's snare
and from the deadly pestilence.
^4 He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
^5 You will not fear the terror of night,
nor the arrow that flies by day,
^6 nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
^7 A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
^8 You will only observe with your eyes
and see the punishment of the wicked.
^9 If you make the Most High your dwelling—
even the LORD, who is my refuge-
^10 then no harm will befall you,
no disaster will come near your tent.
^11 For he will command his angels concerning you
to guard you in all your ways;
^12 they will lift you up in their hands,
so that you will not strike your foot against a stone.
^13 You will tread upon the lion and the cobra;
you will trample the great lion and the serpent.
^14 "Because he loves me," says the LORD, "I will rescue him;
I will protect him, for he acknowledges my name.
^15 He will call upon me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
^16 With long life will I satisfy him
and show him my salvation."
God Bless
David Stevens
I am so sorry to hear of Jessica's pain. I dont know her, but I still feel badly for her and wish I could help. I have been doing lots of research (for an unrelated project) on a nuclear medicine device called Ondamed, which has have had tremendously positive result with patients suffering from Lyme and other infirmities. I am just volunteering the information in the high hopes that this will help Jessica with her suffering. For more info, go to www.ondamed.net.
Hope this helps and if you want to speak to me since I have done lots of research on the device, I would be glad to put in my 2 cents worth!
May God bless Jesssica and keep her in the hollow of His loving hand.
Raul 239-595-2181
Sisterhood and Brotherhood is exactly so!! The phones are ringing of the hook calling the restaurant, and our phones saying, "HOW CAN I HELP".., everything from checks, Computer Training Classes, to Computer Printers, to Limo gift certificates, Comedy Club tickets, Cleaning service certificates, Oxygen Facial....Rounds of Golf...Signed Books, etc...everyone is so anxious to help. In this economy it isn't even making a difference to them, because they care. It's such a blessing!
So many to thank...so little room to, but today especially because of the newspaper, I have to mention a little gal named Jodi contacted the Naples Daily News letting them know the blog address and a man named Jay instantly read it and called and helped us get the word out. MY Goodness...did you see the paper...Jessica and Molly, just the picture of them alone, are 1/2 a page of the newspaper HIGH!! Top that off with the next page finishes the story and is of the air ambulance. Friends that's what this is all about and we are all so grateful!
Those who join us for the event Oct. 3rd at Fred's will be thrilled with the gift donated and certain to buy lots of tickets!!!!
Thanks be to ALL! :>))
PS: phone just rang again...add a crocheted necklace and bracelet set to that that sells at art shows...and forgot....ART donated too!! Whew...Hang On Jessica to the vision!!!
I am overwhelmed with joy that so many people care & actually are taking part to help.The world needs to know they can make a difference...one person at a time.
Jessica & Sarah Gina, I'm praying for the pain free day to come A.S.A.P.
Peace Be With You,
Jodi,Naples
Just called my parents in Naples. They will be praying at their church and will check out the fund raiser and tell all their friends.
praying for you always,
Linda in Saratoga
looking forward to getting the info from the GCFD
Hi Jessica,
After reading The Naple News regarding your story you are an extremely brave young lady to go public with your story. I feel for you as I also was diagnoised with RSD, but I had and now again am having a hard time to find someone to treat me.
I'm not as brave as you to let the world know my story. I hope and pray that when you come home you are a 100% better. I consider you my angel sent from God as I have been searching a long time for a Dr. that can at least calm the pain down.
If possible can someone sent me Dr Finklestein's phone and address? I already have been to Dr Kirpatrick's site. Whenyou are able to I would love to speak with you; as you are the only person I Kind of Know who can truly understand what RSD makes us feel both physically and mentaly.
Please tell Nancy thank you for listening to me she sure is your and your famalies special angel.
All I can give you right now is my Love and Understanding; I really wish I can give you more.
May The Good Lord Protect You My Special Angel and hopefully new friend Jessica.
God Bless and Love You,
Michelle M. Koenig Naples
Looking forward to the fundraisre. It's such a great idea. Our prayers are with both of you. Love, Bonnie
Hi Jessica,
My prayers are with you! I found your site looking for Ondamed testimonies on seizures. The Sept. 23 comment regarding Ondamed is exactly right.(I don't know that person, by the way) My daughter and I both have lyme disease but we stay completely symptom-free using the Ondamed Pulse Biofeedback. I have a very special protocol I use that works GREAT! Please contact me thru my Ondamed page at www.boost-immune-system-naturally.com if you want more information. As you can read on my website, my Onamed has helped save my life in a couple of ways. Also, I have info there that may help you to boost your immune system - our main God-given system for regaining health. May God bless you and guide you and your family! Karen
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