Hi to all our family & friends,
***********IMPORTANT NEWS***************
When we were in Tampa, Fl. in August to see Dr. A. Kirkpatrick, one of the top specialists on RSD, Jessica was asked by him and the people at Fox News Miami - CH. 7, if she would be willing to be interviewed and to tell her story on how her life has been with RSD and her feelings before going into the ketamine coma. Jessica felt that if it would help anyone else who may be suffering with this terrible disease, than yes, she would do it. The reporter from Fox News, Angela Caraway, and Joey, the cameraman, explained that it would be a story about Jessica who was set to go into the coma in 2 weeks and also of another patient of Dr. Kirkpatrick's, Shannon Stocker, and her life after coming out of the coma a few years ago. It was a very emotional interview and we just found out that it is going to be aired tonight!!! Here are the specifics:
The title of the interview piece is called:
" COUNTING ON A COMA"
Airdate: Thursday, October 8th - 10:00 PM Broadcast
FOX News Channel 7 - Miami. (wsvn.com)
I will post the link as soon as I have it for those who cannot see it live.
It will be available tomorrow (Fri.) at their website @ www.wsvn.com
It is a feature story, located @ 1/2 way down the main page when you log on to their site!!!
It is apparently a 5 minute piece and has been entered in an Emmy competition!!!
They are also going to follow Jessica's story until we bring her back home from Mexico to the USA!!!
****REMINDER OF UPCOMING FUNDRAISER:*******
Where:
Garden City Fire Department
347 Stewart Avenue
Garden City, New York
When:
Sat. - October 10th - 6 to 11 PM
Light Food/Refreshments/Raffles
email - BCastoro@gcfdny.com
Donations can also be made to: Jessica's Journey Savings Club
and sent to: Carol Biron-14505 Indigo Lakes Circle-Naples, Fl. 34119
Thank you to all of you who pray for Jessica and our family. I will update you all about Jessica's eyes tomorrow and about ketamine booster #3.
She is hanging in there, but the eyes need to be better real soon! It's another thing she has had to deal with and she is understandably very worried and scared, to say the least!
Till tomorrow,
Jessica's Mom
*** 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!
13 comments:
Thank you for the link Sarah Gina. I've always felt because Jessica is so smart and knowledgable she will be that wonderful Doctor she dreams of very soon helping folks with RSD find relief and GET their LIVES BACK!!
We'll be watching!!!
Love Nancy & Joe S
Dearest Jessica and Gina, That is amazing news about Jess on Fox Channel 7. I can't wait to see it! You will be touching a whole new group of people with your courage and your faith. I read a beautiful quote today: “Hope is faith holding out its hand in the dark.” It so reminded me of you two beautiful women, your beautiful family, and all of us everywhere reading your blog and praying for you. Hang in there! Love always, Angel
I will defineately be watching!!! Jessica's story will touch the lives of those also suffering from RSD! Faithful In Prayer,
Crystal Ulmer
To My Wonderful wife.
I miss you so much. You are indeed the glue that binds. I have learned that its better to be yelled at by a wife who is home then to be alone without one.
God has you on a mission. I expect you will be a changed person when all this is over. Most people who are touched by the Holy Spirit are. Moses was changed, So was King David. Jonah who resisted God at first was. Joseph who spent twelve years in prison- and then became the ruler of Egypt was -and- he never lost his faith. Paul who murdered Christians became a mighty sword of God.
When this is over many who read your blog will be changed forever, Some will have a closer relationship with Jesus Christ. Some will discover Jesus Christ for the first time and others will scoff at his name and be cast off.
Love
David
Love
David
Hi Jessica & Sarah Gina,
Today was a day to celebrate the news about FOX! All day I had that YAHOOO feeling & shared the news to every one I know & any one who would listen to me. You don't know this about me yet BUT I talk to strangers where ever I go,at the grocery store, in line at the post office, the dr's,dentist,even in a parking lot.It's fun & interesting for sure!I'm praying for those eyes to get better so you can continue on your journey.
PEACE, Jodi Naples
I see the previous comments are from ppl who know and obviously love you. I do not know you and your family, but your story was very touching. I watched it on Fox and had to find this blog. I will definitely keep you in my prayers. I hope to see good news in these future blogs. You are extremely brave and inspirational. God bless you and your family.
God bless you and your family. We'll keep you in my prayers. There's a Brazilian saint called Saint Paulina, she is very powerfull. Pray for her, I'll do the same.
Much love!
Bravo...What a great job Fox did on Jessica's Journey!
What fun it will be watching Jessica do all the things she loves again. Praise to our wonderful Lord for he has plans!!
Thank you Jessica for allowing folks into your very private world in an effort to help others as well.
Love and kisses, Nancy
Gina and Jessica, wow, I am so proud to know such an incredibley strong young lady named Jessica Stevens. You are so wonderful to share your story on TV for the world to see. I know it will help many others. God Bless you Jessica and Gina, Love, Bonnie
I just watched the news and saw Jessica's story. May God give you all strenght and faith. I will pray for you and for a miracle. She is a beautiful girl with her whole life ahead. God bless !!
Sarah and Jessica , we are honored to be in the room next to you, your extraordinary bravery and courage against this insidious disease are inspirational to all of the coma families. We are in this battle together and we will win. Cathy and Devon Emmanuel
Your blog keeps getting better and better! Your older articles are not as good as newer ones you have a lot more creativity and originality now keep it up!
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