StopTheSeizures- I triple dog dare you to donate

 

SupportJordanPls

Stop The Seizures!

 

 

 

 

Jordan is a very sweet, kind, fun, and gentle man. Sadly, Jordan has many incurable neurological conditions. These cause Jordan to have life threatening grand-mal seizures, which happen during the day as well as when sleeping.  They have not been able to be controlled, despite currently being on four different  high dose anti-seizure medications.  There is a procedure available to Jordan, suggested by his neurologist, that can help in reducing the number of his detrimental seizures and life threatening falls.  The device is called a VNS (Vagal Nerve Stimulation) surgical implant.

more info about this at the bottom from: https://vnstherapy.com

 

What rare disease condition(s) Jordan has:

    •    partial agenesis of the corpus callosum

    ⁃    connects the two hemispheres of brain so they can communicate with each other.

    •    extensive (nodular) heterotopia scattered in both sides of the brain

  - grey matter

    •    partially formed cerebellum

  - controls coordination, movement and more

    •    arachnoid fluid cyst filling the space of the cerebellum.

 

 

A little bit about Jordan:

Jordan is 27 years old and currently has a part time job at a local pizza chain.  He takes the bus to work and  seeks rides home from co-workers, and family.  

 

 

On his walk to the bus stop, he often sees a family of ducks waddling around.  He shares a picture of the duck family with me each time he comes across them.   It’s been fun watching the ducklings grow together.

 

 

 

He rides the bus because he is unable to drive due to his numerous neurological conditions (listed above).  He is an avid reader (very avid) and loves to play video games.   

 

Jordan is always open and willing to lend a hand, ear, or foot when he can.  He seldom ever meets a stranger, and doesn’t behave as one.

 

 

 

We are asking for any support, helping to fund the cost of the VNS device, hospital, surgical and after care bills.  

 

Jordan does have a minimal insurance plan. The deductible is rather high, with it barely paying any costs beyond that. It was what Jordan could afford since only able to work part time.

 

I thank you for reading this far, and hope you are able to help support my family and I provide Jordan with this device and surgical procedure which we pray will help improve the quality of his life.  

 

What is a VNS & what does it do?

Vagal Nerve Stimulator

https://vnstherapy.com

Proven seizure control for people living with hard-to-treat seizures

    •    Backed by 20 years of data, VNS Therapy can safely lead to fewer and shorter seizures and better recovery.

    •    VNS Therapy is the #1 prescribed device for seizures.

    •    Vagus nerve stimulation prevents seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve.

    •    It is sometimes referred to as a "pacemaker for the brain."

    •    A stimulator device is implanted under the skin in the chest. A wire from the device is wound around the vagus nerve in the neck.

 

Estimated financial  & general breakdown (provided by hospital) for VNS surgery

the goal is for Jordan to get the procedure by the end of May ‘22

    •    $  37,000 - hospital and device

    ⁃    $  3,000 - surgeon fees

    ⁃    $  8,000 - Anesthesia guesstimate

    ⁃    $  5,000 follow up appointments for device and the fine tuning of the correct voltage stimulation, medication and bills during time off work due to procedure and required follow ups, life expenses during missed time at work (meds, rent).

 

Procedure to be performed by:  

Dr. Nitin Tandon, MD

Neurosurgeon with UT Neurosciences

 

    ⁃    We thank you for your action of altruism, hoping it helps bring happiness and joy to you, know your donation will make a giant positive impact in Jordan’s life.