Looking for help to become free of seizures!

Hello, my name is Sean and I'm starting this fundraiser on behalf of my Daughter Nellena aka Rain. She is currently suffering from

Tonic-clonic (grand mal) seizures and this has been ongoing for several years.

She has been put on several different medications and a great deal of these things have side effects that are horrible and severely impact her quality of life. Recently, her seizures have become more frequent and severe.

She has recently been screened and tested to undergo a procedure in which they pinpoint the location in her frontal lobe where the problem is and use lasers to eliminate the specific cause of the problem. Her insurance company has yet to be clear on whether or not they would be willing to assist.

This money will go towards all or a portion of the cost of her surgery. She will need recovery time as well as this is brain surgery after all!

Recovery time is about 4 to 8 weeks typically. In that period, she will experience loss of wages and as we all know, bills do not stop coming!

Recently, her condition has put her job in jeopardy as her employer has decided that her job as a caregiver makes her a liability and she will not be allowed to perform her duties. so, she's really in a bad place. She is seeking counsel to see if she has any legal recourse in this matter which will add to her expenses as well.

Thank you for your time and consideration!

We are grateful for any help that you can provide!

Update...Rain has expressed to me in her own words her situation and how she feels in the following.

At the age of 21, I received a diagnosis of epilepsy, which I had been living with my entire life. When my seizures became uncontrollable, I had to be induced into a coma. Over time, I tried various medications like keppra, lamotrigine, briviact, and vimpat, but unfortunately, each one caused severe side effects, making my day-to-day life extremely challenging.

In the past two years, my seizure disorder has worsened, and I believe the stress from my job is a significant contributing factor. While I used to manage with minimal seizures, the last two months have seen a dramatic increase, with up to 10 to 12 seizures occurring, whereas I previously had only two or three a year.

Interestingly, my triggers are not the typical flashing lights but rather repetitive tasks like doing laundry, walking down hallways, or interacting with familiar people in my life. This has made it difficult for me to continue working at my job, and it has left me uncertain about my career path due to the unpredictable nature of my condition.

The frequency of my seizures has taken a toll on my brain, affecting my memory and emotions. I struggle with balance, and there are gaps in my memory that leave me feeling disoriented and lost. Furthermore, I cope with chronic pain on a daily basis due to fibromyalgia, adding to the burden on my overall health.

Unfortunately, my job does not believe they can provide adequate support, and I fear losing it as a result. Moreover, the surgery I had been considering for a year was recently denied due to its relatively new and more invasive nature. Now, the possibility of a full craniotomy looms, but this means waiting for approval, and the costs involved are significant, something I cannot afford even with a job.

Feeling desperate and uncertain about the future, I am reaching out to the community for help and support. The coming months will bring the potential loss of wages, jobs, and memories, leaving me anxious and unsure about how to navigate through this challenging period.

I am grateful to those who lend an ear and take the time to hear my story, as I face the fear of what the future may hold.

New update as of 7.27.23 4:23 pm... from Rain

As of today,

During my conversation with my neurologist, I provided her with an update regarding the seizure I experienced on my last day of work. Based on the information, she has expressed discomfort about my returning to work and has suggested putting me on short-term disability as a precautionary measure. In the meantime, until the short-term disability can be processed, I will have to take leave without pay for a few weeks.

Her concern is driven by the belief that the recent increase in my seizures may prevent me from resuming work. Additionally, she worries that with each subsequent seizure, there is a higher likelihood of them becoming more frequent, potentially spreading to the left side of my brain, which could limit my eligibility for surgery.

Given the circumstances, she no longer considers laser ablation as a suitable option for my situation. Instead, she is strongly considering a craniotomy/lobectomy as the more favorable choice. Her priority is to schedule the surgery as soon as possible to address the escalating condition.

Ideally, I hope to undergo the surgery within the next month or two, but the recovery could take up to three months, resulting in an estimated total absence from work for approximately four months.

Update as of 8.2.23 from Rain

Apologies for the unfortunate update, but I've been engaged in discussions with my HR representative and union advocate throughout the entire day. It's now confirmed that unless I secure reassignment within the VA by the 12th, I will face termination, leading to a loss of health insurance within 30 days of termination. I diligently scoured all available positions on USA jobs and submitted applications, hoping that one of them would be accepted. Tomorrow, I will receive feedback from my union representative regarding their legal advice, and if circumstances permit, I may consider pursuing legal action.

A Sean aside...

It would seem that there is a window of opportunity to get the necessary surgery done within the reduced time frame which these circumstances demand and if approved by the insurance company, things may take place before the aforementioned deadline reaches the termination date. Then the vast bulk of donations will go to recovery time and paying living expenses!

Update as of 8/28/23

In the past 5 days, Rain has had 8 seizures and just got out of the hospital and is feeling obviously, exhausted!

There is, however, some great news!

Rain has been approved by her insurance company for the surgery!!!!!

We are waiting to be in contact with the "scheduler" to set up a date, which should be quick then it is go time!

I want to thank you all from the bottom of my heart for all the kindness, care and concern!!!

This means so much to Rain and those who love her!!!!

Here is a heartfelt Thank You!!!

More updates to come...

Update as of 9/6/23

The date has been set for Friday the 8th at 5 a.m.. She will be in the hospital for 3 days. After that, she will be released and taken home where she will begin her recovery process which will be around 8 weeks. She has also lined up a job afterwards where she will be allowed to work at home setting up appointments and doing data entry. This means that she will keep her insurance!

In the meantime, she will continue to need support as she will be largely incompasitated.

Update as of 9/12/23

I just finished driving back from Portland So I'm pretty beat. Enough of that though.

Holy cow! The surgery went as planned! Everything fell into place. Everyone was just great!

It was one of the most intense experiences of my life!. Big shout out to Heather,Andrew,Royce, Alice and Holden for being there!

She went in approximately 7:30 a.m. and was in surgery until nearly 2:30! Dr. Olivera and his team are rockstars in my book! Heather and I were the first ones to see her and man, let me tell you it was hard for me to see her that way! Heather made the call that we should hold off on any further visitation with the exception of Andrew.

So later on that evening, Heather paid Rain a visit and brought some of her things.

Saturday I visited her and it was so good to see her doing better. We talked for a bit then it was time for her pain meds and that was pretty much it after that.

So, the next day, Rain contacts me and wanted me to pay her a visit. So I get there and bear in mind she's in the Neural ICU and there's a phone outside these heavy wooden doors that are locked. You have to pickup the phone and identify yourself and who you're there to see followed by the room number. So I get there and she's expecting me. Rain opens the doors herself opens the doors herself much to my amazement! So,we then enter her room and she goes to her bed and she really just wants to go home. I mean she is set and waiting for her nurse to give her the go ahead. I was a bit taken aback but, to my suprise she was cleared then, almost instantly she's on the phone with Andrew to come and pick her up.

It all happened so fast! Here she's goes from brain surgery on Friday to going home on Sunday!

She is ,obviously, in a lot of pain and needs a considerable amount of pain medication but she is home and beginning the process of recovery.

Writing on behalf of Rain and her family and friends, We feel an imense amount of thankfulness and gratitude for all of your support! Thank you!

This is the amount that is due out of pocket

There are some photos of the operation that I will publish soon.

I'm not going to post her surgery pics as they are too graphic, however,

Rain has given me permission to post these pictures of her scars.

She has,recently done a follow up with her neurlologist and they revealed that it may take as much as 4 to 6 months more for the intense pain to subside. She cannot look at computer screens for long without feeling a sense of nausea,which impacts her job performance severely!

She is fighting to survive!

Any donation is beyond appreciated!