Kalynne
Call Jensen is a young mother with three active children, ages 3, 6, and 8. She
is a fun loving person and loves to spend time with friends and family. She is well loved by all who know her. She is a friend to everyone she meets. Kalynne's health has been a rocky journey
since she was in high school. After the birth of her 3rd child
her health got even rockier. She had
good days where she was able to do everything that a normal woman her age could
do and bad days where it was difficult to find the energy to get out of bed and
perform even the basic functions of a wife and mother. She never knows what the new day will
bring. One of her biggest desires is to
have the energy and health to play with and care for her children EVERY DAY!
Initially the insurance company told Kalynne that they would cover the surgery out of network and she would just have to pay her max out of network rate. The surgery was scheduled but just 9 days before the upcoming surgery Kalynne was informed that she would have to pay the max out of network rate plus 75% of all acquired charges. Those charges have to be paid up front, before the surgery! The doctor bills alone will be a minimum of $50,000 if all goes well and the malformation is as they suspect. That does not include the hospital bills or any other related charges. She will be in the hospital for 3 days and then in a hotel for 3 days before being cleared to fly back home. Did I mention that she lives in San Antonio Texas and the Surgery is in North Carolina? She will have to go back to North Carolina six weeks after the surgery, again in 6 months, and then in 1 year for her follow up care. Hopefully there won’t be any complications!
Kalynne’s friend, Nichole posted the following on Facebook:
“How much do we all love Kalynne?! How much do we all want to hug her and cry with her and do something to help her. I feel it is safe enough to say she has touched each of us in special and wonderful ways. She is an amazing mom amazing friend and always blessing others lives! I want to do some thing to help in this situation of hers but feel like alone I can't do much but together maybe we can do something to help?!
Does anyone know sites like go fund me or something we can set up to bless her and help her family do what needs to get done? I would look into but maybe a family member wants to set it up?
Kalynne would never ask and never initiate something like this on her own. Yet I know if the situation was reversed and I was sick she wouldn't listen to my protest and be raising money against me saying I'm embarrassed.
Once I was broke disheartened and told Kalynne I was fine but she came with groceries and she said to me..." I don't care what you say you need this". I don't have a lot but would love to share a little and tell her I don't care what she says she needs this! I do know if we all give a little it adds up!
Kalynne let us love you in the way we can and do something to gather funds for YOU! You are so much like the savior in so many ways and it will bless all of us to set up an account for you!
Please Kalynne fans and loved ones...tell her she needs to let us do this!!
Kalynne I love you and hope your friends see this before you do!”
As Kalynne’s mother I have been praying for a way to get her the help she needs. Thank you Nichole for giving our family the courage and strength to reach out to our family, friends, and the community to ask for help. Our goal is to raise $100,000.00 to help her pay for her brain surgery. We would like to raise a large percentage of that by her birthday, February, 12th. What an awesome gift that would be for her! If you are touched by her story and would like to help make her surgery a reality, please share this with your family and friends and donate to her fundraiser. No donation is too small. We’re praying for a miracle!!
You can help Kalynne get her much needed brain surgery using Anything for a Friend, PayPal, or Wells Fargo Bank, or GoFund Me. With all three, 100% of all donations go to Kalynne's surgery. The instructions are here and again at the end of this post.
Anything for a Friend - http://www.anythingforafriend.com/index.php?cID=303
PayPal – Copy and paste this link: paypal.me/kalynnesmiracle and put Kalynne Jensen in the name field.
We are doing a fundraiser to help Kalynne with her expenses because she is not getting the needed help from her insurance. Our goal is $100,000.00. We are trying to get a large portion of the funds raised by February 12th, her birthday. What a great present that will be for her!
You can help Kalynne get her much needed brain surgery using Anything for a Friend, PayPal, or Wells Fargo Bank, or GoFund Me. With all three, 100% of all donations go to Kalynne's surgery. The instructions are here and again at the end of this post.
Anything for a Friend - http://www.anythingforafriend.com/index.php?cID=303
Wells Fargo Bank, Routing #124002971, Account #3276983776
Go to any Wells Fargo Branch and tell them you want to donate to the Kalynne Jensen Brain Surgery Account. You can also do an online transfer.
PayPal – Copy and paste this link: paypal.me/kalynnesmiracle and put Kalynne Jensen in the name field.
More of her story:
She met with doctors who were not very sympathetic to her problems and after running tests told her there was nothing wrong with her. She knew that something was wrong and was determined to find out what the problem was. She started researching her symptoms and was pretty sure she knew what was causing her problems but couldn’t find a doctor that knew enough about them to be able to give her answers. Finally in July of 2016 she and her husband Ian met with a knowledgeable geneticist and it was confirmed that she did indeed have what she supposed, Ehlers Danlos Syndrome (EDS) and he suspected Chiari and Postural Orthostatic Tachycardia Syndrome (POTS) as well. She needed to meet with a neurosurgeon and an electrophysiologist to diagnose the latter. All of her crazy unexplainable injuries, surgeries, and problems were starting to make sense and she felt like the puzzle pieces were fitting together at last.
She met with doctors who were not very sympathetic to her problems and after running tests told her there was nothing wrong with her. She knew that something was wrong and was determined to find out what the problem was. She started researching her symptoms and was pretty sure she knew what was causing her problems but couldn’t find a doctor that knew enough about them to be able to give her answers. Finally in July of 2016 she and her husband Ian met with a knowledgeable geneticist and it was confirmed that she did indeed have what she supposed, Ehlers Danlos Syndrome (EDS) and he suspected Chiari and Postural Orthostatic Tachycardia Syndrome (POTS) as well. She needed to meet with a neurosurgeon and an electrophysiologist to diagnose the latter. All of her crazy unexplainable injuries, surgeries, and problems were starting to make sense and she felt like the puzzle pieces were fitting together at last.
EDS is a rare connective
tissue disorder that results in faulty collagen throughout the body.
Collagen is in the muscles, skin, bones, blood vessels, tendons, and
digestive system. It's basically the glue that keeps the body together.
A person with EDS has weak collagen and nothing can be done to strengthen
it. Normal people can consume things to help strengthen and rebuild
collagen but with EDS the body just keeps rebuilding weak collagen. As we
age our bodies naturally begin to slow collagen production. That is what
makes our bodies show signs of aging such as wrinkles, saggy skin, joint pain, etc.
Those with EDS are on a fast track to deterioration, especially with
joints and skin. There is no cure for EDS. People with EDS have to
be very careful to avoid injury as much as possible. They can easily
dislocate bones just by stepping wrong or sleeping in an awkward position.
POTS is a form of orthostatic
intolerance that makes blood pressure and heart rate go up and down drastically
when laying, sitting, and/or standing.
Kalynne's
conditions are very rarely diagnosed and/or understood in the medical community.
The geneticist's office is four hours away from where she lives so he was
unable to give her recommendations for specialists in her area. He encouraged Kalynne
to join on-line support groups to find resources and suggestions for doctors
who were knowledgeable on her conditions. After being blown off and ignored by
so many doctors who didn't take her seriously and being told so many times that
nothing was wrong with her and her symptoms were “all in her head” it was
refreshing to have someone in the medical community tell her to seek out actual
people who know the conditions and live with them.
Kalynne
had MRIs done on her brain and spine. Two
doctors told her, "all is clear, you are fine." However, she
had been doing her own research and learning more information on her
conditions. She asked for a copy of the MRI. When she looked at the
MRI she could clearly see a Chiari Malformation and her brain stem was crowded.
She sent her MRI disc to an expert Neurosurgeon in North Carolina who
specializes in Chiari and EDS and he sent back a report indicating what he saw
and told her a full neurological exam was needed.
Kalynne
and Ian traveled out of state to see the doctor who specializes in Chiari and
EDS. They paid 100% of all expenses for
the initial exam because the insurance wouldn't cover it. They were
willing to pay for that because they wanted his expert advice and opinion on
her condition. They wanted to hear from him what was going on with her
and why she was feeling so poorly and in so much pain. They met with him
for 2 hours and learned so much about her condition. He took the time to
talk with them about her symptoms and the best course of action. He told
her, “It is all in your head, literally!”
She needs brain surgery! With her Chiari
malformation the lower part of her cerebellum is pushing downward below the
skull opening. This malformation is
restricting communication to everything in her brain because it is so
squished. Her brainstem is tilted and torqued because of the malformation.
She needs brain surgery to relieve the pressure and open the communication to
her brain.
At this appointment they learned Kalynne
also has degenerative disc disease, mild scoliosis, low muscle mass, diminished
sensitivity to nerve sensation, and dysautonomia. All of these are due to the Chiari, EDS, and
POTS.
EDS and Chiari
Malformation are often seen together. Chiari
has many symptoms and it affects everyone differently, making it even harder to
diagnose. The symptoms make it difficult
to do basic day-to-day activities because the body has to work 4 times harder
with every task. The doctor compared it to a car with a wheel off balance and
how all the systems have to work harder to compensate. Kalynne struggles with constant fatigue and pain
as her body is fighting itself. There is
no cure. Decompression surgery is the
only treatment available to make room in the skull and allow proper CerebroSpinal
Fluid (CSF) flow to reduce further damage.
Kalynne’s doctor is confident the surgery will significantly increase
her quality of life!
During surgery the neurosurgeon will
permanently remove part of the base of the skull and open the Dura. Next he will cauterize and remove part of her
cerebellum (the part that is pushing down into the spinal canal). He may have to cut both C1 and C2 to
accomplish this. If you would like to
see a video representation of the surgery click here: https://youtu.be/x3l2YMUuwfs (Be patient while it loads.)
For more information here are two
websites:
We have set up three ways to donate:
PayPal – Copy and paste this link: paypal.me/kalynnesmiracle and put Kalynne Jensen in the name field.
Anything for a Friend - http://www.anythingforafriend.com/index.php?cID=303
Wells Fargo Bank, Routing #124002971, Account #3276983776
Go to any Wells Fargo Branch and tell them you want to donate to the Kalynne Jensen Brain Surgery Account. You can also do an online transfer.
PayPal – Copy and paste this link: paypal.me/kalynnesmiracle and put Kalynne Jensen in the name field.
Remember to share this with your friends and family! We have a huge goal and are praying for Miracles!!!
Thank you for your love, prayers, donations, and concern.
Thank you for your love, prayers, donations, and concern.
