7
7

Help us Conquer Chiari in Phoenix!

$500 of $2,500 goal

Raised by 6 people in 20 months
Brittany Raissa Long  TWIN FALLS, ID
My Name is Brittany and this is my journey...
I am 24 years old & the mother of 3 beautiful young children. I have a loving partner who has been and continues to be my strongest supporter. We were a normal, happy, active family until I got sick...





. Thats when everything changed...

One year ago I went to the hospital for chest pains, a headache and trouble swallowing...
The Doctors monitored me for a few hours and decided I was fine so I was sent home.
This was the first of weekly (sometimes 3+ times a week) visits to the ER from what seemed to be random unexplained yet concerning symptoms. Everytime I was evaluated, tests came back normal and I was sent home. This went on for 5months.
I began to grow weaker by the day, losing weight quickly, losing motor skills, tremors, loss of memory, difficulty speaking, even struggling to get out of bed by myself and the biggest of them all: Severe debilitating headaches. I was forced to resign from my job and slowly lost my ability to even leave the house.
During those 5 months I was seen by 8 different doctors in every specialty field; Neurlogy, pychiatry, cardilogy, the list goes on.
No answers.
I begged my doctor to do one last MRI knowing in my heart that something was not right and an answer had to be there.
3hours after that MRI we got a call. I was diagnosed with Chiari Type 1, a rare disorder that causes a vast list of symptoms including every one I had experienced in those 5 months prior. We were sent immediately to Neurosurgeon to be evaulated.
He had no answers.
Feeling defeat we began trying to establish a new 'normal' for our family.
There were good days...

But more often there were bad...


As time went on I joined a support group for the 5000 of us in the world who knowingly battle this disease (Its very hard to diagnose) I was made aware that there are only 2 Neurological centers in the US that specialize in our disease. As hopeful as this seemed that someone was out there we also knew our journey wasn't ending but almost felt it was beginning all over again.
My Doctor sent in everything requesting I be seen and then the waiting game starts....after 3 gruelling months and many phone calls later we got a call...I was accepted into the Barrow Neurological institue in Phoenix, Arizona!
We were relieved and hope came flooding back.
Then the reality set in...
I'm going to have Brain surgery (There is no cure for my disease only a surgery to relieve the pressure for as long as possible). Now what?
Unfortunately I cannot give anymore details of my journey as this is the furthest we've come. As of now the only thing standing in my way of treatment is getting to Phoenix July 29th and every date my team of doctors set after. The task of getting proper treatment. getting to where it is located and financially maintaining a household of 5 is not simple.
We'd like to thank everyone for either reading this, following our journey or donating if you are able. Most of all please help spread awareness for this disease so someday treatment won't have to be so far away.
+ Read More
Help spread the word!
 248 total shares
Update 4
Posted by Brittany Long-Jeffers
18 months ago
   Share
Greetings Friends, Family, Fellow Warriors & those of you just passing through!
Well we did it. Thanks to all of you I made it to Phoenix for what indeed was a life changing appointment.
I know everyone has been eager to hear how it went, I apologize as I ended up having to drive myself there and back (Roughly 1700miles) in just under 4 days total therefore I have been trying to recuperate being as someone completely healthy would be exhausted, add my disease and lets just say its been a 'bad brain' day.
So as you may have noticed our goal amount has changed, the reasoning being is the outcome of the appointment has drastically changed my needs and quickly.
After spending 2hours with whom I would argue is the best doctor I've ever had in my life we have a plan and have narrowed it down to 2 possible causes as well as 2 separate outcomes.
But the main answer is, Surgery is happening.
Now for the game plan.
The start of both scenarios begins with some very specific testing that I have never had done before and also never even heard mention of from the 8+ doctors we've seen for my illness in the last year. The tests are to determine if I will be having Surgery A= Decompression Surgery which was what we knew as the only treatment for Chiari thus far. Or Surgery B=Repairing a Spinal fluid leak that could be anywhere from my brain down my spine causing the lower part of my brain to sag thus causing Chiari and the symptoms that come with it.
How is this determined? So here is where the change in amount comes into play...I do not have health insurance as of now and cannot get it before January 2016 unless some special pieces fall into place. In order to have the tests done to determine which surgical procedure needs to take place we need to raise some funds! I don't completely understand all of the tests but one is going to light up my brain and spine like a Christmas tree and it will show the doctor if and where the spinal fluid leak is at. IF there is no leak then brain surgery it is! If there is I will have minimum of spinal surgery (unless its in the brain) to repair the leak and then still quite possibly will have the decompression to fix what damage the possible leak caused.
How much time do I have?
Great question! As many of you know in the last 3-4weeks I began experiencing loss of sensation in my legs making it difficult to walk at times. As the doctor was doing tests on me on Weds the realization became very clear that things are progressing much faster than I even thought. As of now I have lost nerve sensation from my knees down to my feet (reflexes not responding correctly), the entire outer part f my body (think your pinky and up the outer part of arms, legs, face, etc), my hands & fingers. Loss of sensation does not mean I am paralyzed, I feel pressure & cold. I do not feel sharp, hot, scratch etc. Best way to describe is my fingers are getting cut a lot without me noticing! My connective tissue to my joints is also loosening rapidly causing my balance and clumsiness to take on a new level of ridiculousness, my vision is slowly becoming blurrier as well as those of you around me the last few weeks have likely experienced my difficulty in conversing & thought processing.
With all that being said, HUGE thanks to all of you who helped get us to this Angel of a Doctor because we now have hope!
None of these symptoms at this point are irreversible, HOORAY!!!
We still have a long road ahead with at least one major surgery but that can't happen until we get the testing done. The longer we wait the more my symptoms will impact daily living and possibly not completely be corrected. Once testing is done we will be headed back to Phoenix to get surgery dates in place and everything taken care of.
We cannot even begin to thank everyone enough for getting me this far for treatment, you have greatly impacted our family with all the support and love.
As I go through this challenge life has presented me the one thing I want, hope for and continue to push is that this is such an unknown to everyone not only around me and our little family but to the world. I CANNOT feel that I have done enough with the opportunity I have been given to give those with this disease a voice unless I ask to PLEASE continue to SHARE our story far and wide!!

~Brittany, Nick & Kids~

I choose to be positive, I choose to not become my disease, I choose to make a difference, I choose to be UNSTOPPABLE!

"Every day may not be good, but there is something good in every day."

+ Read More
Update 3
Posted by Brittany Long-Jeffers
18 months ago
   Share
Hello friends! I apologize for not updating sooner but due to some urgent family matters life threw at us we were forced to reschedule my appointment for Aug 12th! Unfortunately during these past 2weeks I have begun to lose feeling in my legs so it's clear that it is indeed progressing. We have been blessed to have been in contact with the specialist via phone to help give some input and reassure that proper treatment will help immensely. Now that we are back on track for treatment please share if you are willing to help us continue to spread the word for awareness of this disease. Thank you for all the support through this journey!
+ Read More
Update 2
Posted by Brittany Long-Jeffers
19 months ago
   Share
Only 6 days until our appointment, 4days until we leave(it's a long drive)!! Please help us get the word out if you can :-) <3
+ Read More
Update 1
Posted by Brittany Long-Jeffers
19 months ago
   Share
We are 8days away from a life changing appointment in Phoenix! Thanks to everyone's support in getting us this far!!
+ Read More
Help spread the word!
 248 total shares
Read a Previous Update
Be the first to leave a comment on this campaign.

$500 of $2,500 goal

Raised by 6 people in 20 months
Created June 26, 2015
Brittany Raissa Long  
$20
Anonymous
19 months ago
$75
Anonymous
19 months ago
$200
Anonymous
19 months ago
$100
Anonymous
19 months ago
$100
Anonymous
19 months ago (Offline Donation)
$5
Anonymous
19 months ago
Be the first to leave a comment on this campaign.
or
Or, use your email…
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now

Pledge now, give later.

Pledge Now
You won't be charged for this pledge. We'll let Brittany know that you have pledged support.
Thank you!
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.