ME Warrior Girl and Team are back, and this time, with an entirely new goal to fundraise towards and fast approaching deadline of FEBRUARY 21st, 2020! As some of you may recall from our last fundraiser, we left off with a laundry list of new diagnoses, on the way to building an effective and efficient medical team, and trialing multiple treatments. You might also recall that one diagnosis Jenna received was something called Craniocervical Instability a.k.a CCI (http://www.thepainrelieffoundation.com/craniocervical-instability/ ), a complication of her genetic connective tissue disorder, Hypermobile Ehlers Danlos Syndrome.

Since then, life hasn't really settled down much at all. While treatments have had some success in reducing some symptoms, Jenna's overall condition is worsening rapidly and her EDS and CCI can take a lot of the blame for that. Jenna's connective tissue all over her body is weakening, damaging her skin and joints, causing pain, worsening her GI symptoms, and making even the simplest of tasks a monumental effort due to pain, fatigue, lack of proprioception, and loss of balance.

Due to the CCI, her skull is compressing her brainstem into her spine causing and contributing to a host of neurological symptoms including horrible migraines, nausea, vomiting, dizziness, dystonic storms, paralysis, numbness and tingling, increased GI dysmotility due to worsened autonomic dysfunction, night sweats, even more body wide pain any so many more symptoms that we can't even keep track of half of them.

As a result of these conditions worsening, many of her other conditions are flaring as well. Her autonomic dysfunction has worsened and she is crashing hard and often as a result of post exertional neuroimmune exhaustion (PENE/PEM) from her Myalgic Encephalomyelitis being exacerbated by all the energy her body requires just to survive all these symptoms (which is dangerous because constantly triggering PENE/PEM can lead to a permanent worsening of her baseline condition/symptoms!)

For almost the entire year, Jenna has been dealing with bodywide edema (swelling) and increased allergic symptoms like severe diarrhea and others, due to inflammation from her mast cell disease being triggered constantly by not only her environment, going out for appts, and her other usual triggers, but also by the irritation caused by EDS and CCI all over her body.

We are using every treatment and medication in our arsenal to combat these flares and our doctors are doing everything they can to help, but Jenna is still spending much of each day in significant and sometimes uncontrollable pain, discomfort, and heavy brain fog. The symptoms from EDS and CCI alone would be more than enough to leave Jenna house or bedbound the vast majority of the time, but combine them with her other conditions being flared and she is struggling just to make it through each day without breaking down from the severe onslaught of symptoms. I wouldn't wish this hell on my worst enemy even if I had one! This is no way for anyone to live!

So now, we are commencing our fundraising efforts to get Jenna the surgery her doctors believe is the only hope in giving her some quality of life back! With the evidence that her brainstem is being compressed into her spine as the result of her genetic connective tissue disorder, Hypermobile Ehlers Danlos Syndrome causing lax ligaments/connective tissues in her cervical spine leading to CCI, her doctors believe her only hope of relief is a craniocervical fusion. This neurosurgery is performed on the skull and the upper part of the spine by first correcting the position of the head and neck with traction, and then fastening the head and neck in place with a framework or rods, screws and donor or artificial bone matrix.

There are only about 3 neurosurgeons in the whole world who are willing and able to take on the risk and additional complexity involved in performing a fusion surgery on a patient like Jenna. However, while the risks are significant, the potential rewards are even more so. This surgery has the potential to give Jenna some and maybe even A LOT of her life back, something we were beginning to lose hope of after this miserable journey. While none of Jenna's conditions have a known cure, there are at least several patients with very similar presentation to hers who have come out of this surgery and found themselves in some sort of remission from dozens of symptoms that they had no clue the CCI was involved in! There are never any guarantees when it comes to the medical world, but this surgery could literally determine the path of our entire future together!

Unfortunately, since only several neurosurgeons worldwide have the skill set to perform this procedure on this patient population, receiving the surgery and finding a safe and effective path to recovery is going to require a significant amount of time and travel across the country.

This means we will have an extended stay between Minnesota and New York for pre-surgical testing and for surgery itself, and then another extended stay in Rhode Island when it is time to begin post surgical PT (as she will need a very specialized physical therapist to develop a PT program that is safe, effective, and manageable for home PT to continue given her conditions).

The cost of so much time off work for me on top of all the out of pocket expenses involved in medical travel is going to be more than we can find a way to afford on our own.  We have looked into every local, state, and federal program option we can find for assistance, but we seem to just fall right through the cracks of every program. Therefore, we are asking for your help today to assist us in following this path to what might turn out to be a much improved quality of life and future for the both of us!

In order to make the initial trips to Minnesota and New York and manage the post surgical care until we reach the PT stage, we estimate that we need to fundraise the following by FEBRUARY 21st, 2020!
(We leave for Minnesota the next day, have 2.5 weeks of pre surgical appts in MN and NY, and then surgery is scheduled for March 11th!)


This is a GIGANTIC goal and is going to require a lot of help, but everyone deserves the chance to have some quality of life and without this surgery, we may never see a chance like this again. We want to live our lives again. We want to travel the world for NON medical reasons, hike our favorite trails, run every 5K fun run we can find, spend long nights out celebrating everything special with friends and family, and raise a beautiful family of our own! So please, please help us in any way that you can, either by donating, encouraging others to donate, sharing our story, etc. We could use every bit of help we can get and we are beyond grateful to everyone who has helped us so far and everyone who is going to help us with this effort <3

With All Our Love and All Our Hopes and Dreams,

The Alexander-Montgomery Family

P.S. We made the front page! Read the article about our journey so far, right here: https://www.thedickinsonpress.com/lifestyle/health/4778752-Overcoming-M.E.-a-daughters-struggle-to-find-treatment-locally-for-severe-pain 

Read further details of our story by visiting our FB page at: www.facebook.com/MEWarriorGirl