Miracles for Marissa

$16,025 of $25,000 goal

Raised by 180 people in 15 months
Created June 16, 2017
Lee Ann Tejeda
on behalf of Marissa DeVaul Parmer
                            MIRACLES FOR MARISSA

Hello, my name is Lee Ann Lewis Tejeda.  I am a long-time friend, Delta Zeta sister of Marissa DeVaul Parmer. As some of you may know, Marissa was diagnosed with Epilepsy in 2005. Throughout the years, she has experienced uncontrollable seizures and later, was also diagnosed with Fibromyalgia.  Since November 2015 the seizures have spread to both sides of the brain, becoming more intense, and occurring 6-10 times a day and also many in her sleep.  She lost her license, making life as we all know it, a little more challenging, as far as, getting to work, social outings, or even the simple things such as picking up her children from  academic and/or sports activities.

 If you know Marissa, sitting at home and doing nothing is not for her, so she has trudged along with Brent, her boys and family/friends by her side.  But needless to say, the medical expenses for monthly specialized medications and procedures have added up and recently, Marissa underwent surgery to implant the RNS system into/on her brain. The surgery is of cutting edge technology and if all goes as planned, she could one day be seizure FREE….Miracles for Marissa!!   However, until that day comes, she is required to be in Florida every eight weeks for follow-up appointments, which is why I’ve created the go fund me page to help with medical and travel expenses.

 Please consider donating, any donation, no matter how small would be graciously appreciated and let’s rally around Marissa and her family and help relieve some of the financial pressure so she can focus on healing and being a mom, wife, daughter and colleague/friend.

 Much love,

Lee Ann
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Ok I am not sure WHY when I post pictures with my updates, they look fine & then when I read the update, it cuts off the top. (At least it shows that way on my phone, maybe not in your emails. My apologies. Hope you get the picture )

Onto the Dr. update from my Mayo appointment July 27th.

These appointments always are very quick turn around trips due to work & our boy’s busy schedules. It is always nice no matter how short to see my parents for the comfort needed. This trip had an added whirlwind of saying goodbye to my brother’s family as they move from FL to TX & my sister’s family was back from Ecuador.(miss them all always)

I think in the back of my head the other reason I have been avoiding writing this update, is it doesn’t make things as “real”. Brent and I knew leading up to this appointment the seizures had become more debilitating but I was still holding out hope from what Dr. Feyissa would actually say.

The TRUTH hit me as soon as I was landing unfortunately. I began having a seizure as the plane landed & as I was deplaning it went into a full blown seizure. I immediately called Brent so he could help me come out of it, as I finally found somewhere to sit. The sad/scary fact is the last thing I remember is the plane landing & the next is being in my dad’s car.

Jump forward to sitting with Dr. Feyissa. The 1st question he always asks is “how do you think your seizure control has been & how are you feeling?” I am not sure if he asks this to see how much I am physically feeling compared to what is showing on my RNS Device which he reads/other colleagues & the RNS Engineer.

Of course my reply was unfortunately Dr. we feel I am getting worse since the changes made at my hospitalization in June & have also noticed some “different type looking” seizures compared to “my normal”.

He said “unfortunately I agree & it was not what I expected at all. There were days I looked at your data and can’t imagine the physical pain you are experiencing but also notice your seizures frequency, location and spikeness have all increased & changed. This is why your log and videos you take assist me even more for your treatment.” (Not exactly what I wanted to hear)

He then has me show him my seizure log & if I have any videos possibly of seizures he can see. He compares the times I log to what times are logged on my RNS implanted device and how severe the spikes are. He has me rate them a 1/2/3 scale and then describe where I was, what happened, what the weather was that day & anything out of my normal schedule regimen that occurred.

I am blessed that my DR along with the Engineer spend usually around 1.5 hours with me during my appointment. I also can ask questions from afar via my Mayo Portal.

There is a LARGE summary on my Mayo Portal but in short this is the plan:
1) changed how far out my RNS reaches on my left side & how long it stimulates in one jolt. As it seems my seizures are growing/mutating. (Much like they would describe how Cancer does)

2) I am scheduled to have 5 days straight of IVIG infusions at UK in Lexington to hopefully boost my immune system and reduce my GAD65 elevated numbers. After that it would be 1 month 1x each week & make decision based on results. Unfortunately; UK can’t see me until October 15th & I have to go through a consultation first.

3) Change out 1 of my 4 meds with a new 1 on the market. He still feels I will need to be on 4 meds.

4) Change work schedule to work from home 20 hours a week, in place of at the office

5) Follow up at Mayo & make decision if Brain surgery is a viable option we want to try or if we can continue to go higher on the RNS Device.

6) Know not to “push through debilitating seizures & let my body rest. I am not who I was”

Since we have returned home things have been rough with various types of multiple seizures daily, but it has also become tougher for me to stay as positive as I was before. Coming from a person who never gives in & has always been the one in life the team or family lifts up with positivity in life is tough.
I HATE it, but I know I am not the same person I was 3 years ago when my seizures came out with such strength or even since my year anniversary of the brain implant in May this year. Yet of course my stubbornness wants to push through any level of seizure to continue to be that same 24/7 hard worker, a mom who can go go go & do whatever her family needs at anytime.
Of course I end up paying for it by a day in bed with non stop seizures & exhaustion. This of course does MORE damage than good for my family who already has to do so much for me.

(My husband reminds me daily I don’t have to be Super Woman to be a wonderful wife & mom). Some days I don’t know how he does it, but I am blessed and thank God daily he placed Brent by my side through it all. He never waivers at anything that happens. As he reminds me. Him & the boys have accepted it as the “new normal life” for us, I just need to learn myself now. They love me for me.

For those that always ask me “how are you today”, please don’t get offended if I say “I am ok”. Most days I just want to be “me” & not the “me with Epilepsy”. I know you truly care & I am so thankful for all that are in my life. Maybe next time just ask “how are the boys, how is work etc”. I think part of me feeling down more now is because if I gave you a “real answer” I am afraid you may run, or not want to hear it anymore and disappear from my life.

Don’t get me wrong either I appreciate a compliment when you say “you look good today”, cause I know your heart is in the right place. In my head though I am thinking, shoot I looked bad yesterday & didn’t “cover it up” well enough. (Although I have learned wearing more make up is key.....those that know that is a change. )

So in closing our family takes each day just like any other family does. Yes we may have struggles to deal with, but everyone has some in their own way. My boys may just have to deal with at times a crying menopausal mom/wife out of nowhere, that lives with Epilepsy & Fibromyalgia.

#WeFightEpilepsyAsAFamily #EpilepsySucks
Learn Epilepsy Facts.
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We celebrated Broc turning 14 on August 3rd....of course at baseball that weekend & he wouldn’t want it any other way.

We had to quickly get the house prepped for our visit from Grandma & Gramps Parmer on August 8th......OH and celebrate Brent’s Birthday that day (but he gets the whole month, so we were good if a bit busy ) During their visit they did get to enjoy seeing both boys play in scrimmages & also play taxi a bit as well. ☺️ (thank you) We had a great visit.

Then came that thing called school for our young men. Both now attending Madison Southern High School. Broc 9th & Bryce 10th. Broc admitted he was a bit nervous

I am happy to report both are excelling in their sports and learning how to properly study being on the AP & Honors Track at school. Bryce has Soccer on Tuesday & Thursday’s where he is playing every minute of his JV games & Varsity playing time too. Broc serves as Captain of his Freshman football team playing WR & LB not sitting out a minute. He also gets JV playing time and has the honor now of dressing Friday nights for Varsity. As you can see they are TRUE Student-Athletes & we don’t have a night off

Brent had GREAT success with his opening events at EKU to kick-off the fall session! Of course I always brag about how impressed I am (but I hear it from many on campus) with his creativity on how these events began and have grown over the years. He continues to be extremely busy in all of his areas! All while he manages being an UBER for the family & be our solid Rock.

As for me I am back in my old role at EKU as Director of Donor Engagement, very busy with many different hats right now.

OK so that was a bit LONG FAMILY UPDATE.....but now you see why the health update has taken a back burner.
Dash continues to be my seizure dog
Back to school 9th/10th
Soccer middle defender & WR TD catch
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LONG UPDATE I apologize for the delay from my last Mayo appointment on July 27th. I first want to continue to thank my prayer warriors, rides for myself or the boys when my “Uber” Hubby is stuck in a meeting, the support in so many ways by family/friends/colleagues in which we cannot ever repay or tell all of you thank you enough.
(FAMILY UPDATE)1st before I get to Dr. health update. It has been a whirlwind since I was hospitalized in June. (Hence delay in health update)
While we were at Mayo in June we found out we had to be moved out of our rental house no later than the end of July. We had to waste no time when we returned to find a new rental home, pack up the house, pack for our annual #BomberNation Gulf Shores USSA Baseball, pack Bryce for MSHS Soccer Camp(as he would go the day after we return from baseball). We enjoyed a great time away in Gulf Shores, even with the continued seizures & 1 severe seizure. We returned to ship Bryce off to camp, continue working, get Broc to football 2x a day while also going to MSHS Baseball practices and Bomber tournaments on the weekend.
Oh and squeeze in that thing we call work for us and clean the house we were moving out of, while we moved into our new rental home. (Thank goodness for Grandma/my mom & great friends/colleagues)
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Until next time:
I will continue to BATTLE even if some days I feel so weak, & that I let my loved ones down at times. They are there to lift me up & remind me they ARE THE REASONS I FIGHT!

I leave you with this from an unknown Epilepsy Fighter:
“Epilepsy changes people. It sculpts is into someone who understands more deeply, hurts more often, appreciates more quickly, cries mores easily, hopes more desperately, loves more openly, and lives more passionately.” Author unknown
Battle scars to remind me
My young men who need their mom
What my husband does daily
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$16,025 of $25,000 goal

Raised by 180 people in 15 months
Created June 16, 2017
Lee Ann Tejeda
on behalf of Marissa DeVaul Parmer
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