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Kaitlin's Fight~Autoimmune Encephalitis

$4,830 of $10,000 goal

Raised by 79 people in 3 months
www.myastheniagravis.org 34175952_1541131730212069_r.jpegThis is my daughter Kaitlin. She is a 24 year old young woman who was diagnosed 10/31/18 with a rare incurable neuromuscular autoimmune disease called Myasthenia Gravis. 
Her official diagnosis is Myasthenia Gravis with (acute) exasperation. 
www.myastheniagravis.org

What this means is that her muscles aren't receiving the signals to contract or move.
This currently affects her ability to see, walk, talk and eat. Her eyes also droop because the muscles are too weak/fatigued to keep her eyelids open. As a result of this disease she is unable to work. 
Those of you that know Kaitlin know how full of life she is. How she's always on the go and that softball is her life. This disease has abruptly stopped her in her tracks. 

I am asking for help to help offset the medical costs that she is facing. Those of you that know me know that I am a single mother and I have exhausted all I can financially up to this point. She has a long road ahead of her. 

With the diagnosis comes medications that are not covered, multiple referrals for additional tests along with IVIG treatments that need to begin in a month. This treatment alone costs between $5,000 and $10,000 per treatment.  This is the first step in trying to manage this incurable disease. She may at some point also need to have surgery to remove the Thymus Gland which is right above the heart. Most of treatments are not covered by insurance.

My hope is to have some help with this journey to take some of the financial stress off of her. Stress exasperates symptoms. 

Anything will help. If you're unable to help please share this! By sharing this it may help bring awareness to this often misdiagnosed rare neuromuscular autoimmune disease. 

Thank you for reading this. 

"She is clothed in strength and dignity and she laughs without fear of the future"~Proverbs 31:25
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Test results have come back from the Mayo Clinic. We received this official news yesterday 1/25/19. As previously stated, Kaitlin was misdiagnosed and they have confirmed that she does not have Myasthenia Gravis. We did however receive the news that in addition to Autoimmune Encephalitis that she only tested positive for one of the 30 markers that were sent out. This marker is Paraneoplastic Syndrome which essentially means cancer without tumors present. Essentially this marker typically will have another marker test positive to then correlate to a specific disease. For Kaitlin this isn't the case which makes it extremely rare and potentially difficult to treat. With that said she was given a treatment plan which we hope to start next week. The plan is to do 5 more plasmapherisis exchanges in addition to starting chemo.
Despite this news Kaitlin maintains a positive attitude and good spirits.
There is still a long uncertain road ahead that may include her being sent to the Mayo Clinic in Rochester, Minnesota.
At this time we have exhausted financial means and continue to have costs associated with her medical needs in addition to just paying everyday expenses like rent, gas, utilities etc.
Please continue to share or donate. Thank you for blessing her and I with your love and support.
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Kaitlin is still fighting the fight. She was hospitalized from November 30th to December 12th at Cottage Hospital. During her hospitalization the team of doctors informed us that she ultimately was misdiagnosed with Myasthenia Gravis. At this time we're still waiting for results from Mayo Clinic to have a solid diagnosis. December 12th she was admitted to Cottage Rehabilitation Hospital until December 27th. As a result of the hospitalization for nearly a month I have taken a leave of absence to care for her. This has caused considerable financial hardship as I wait for state family leave to kick in. The 'general' diagnosis is Autoimmune Encephalitis which basically means inflammation of the brain and central nervous system. The cause of her symptoms is coming from her brain stem. They don't have a solid plan of treatment for her until they have results and a diagnosis. Please continue to share and support if you're able to. I sincerely appreciate every single person that has shown us kindness and support. ❤️
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Thursday night Kaitlin faced another challenge with Myasthenia Gravis. She was presenting early signs of respiratory failure. She was unable to speak more than one word without gassing for air. She also was choking on water more than she has been. As a result of this we headed back to the ER. She was then transported to Cottage Hospital where she's currently in the ICU. She's expected to be in the hospital for at least a week while they try yet another treatment. This treatment called plasmapherisis we hope she responds to and can manage this beast of a disease. Please continue to share this gofundme. Anything to help while she focuses on fighting to get this under control is appreciated! Thank you again for your donation, kindness and support!
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First and foremost I would like to thank everyone that has donated thus far. It is impossible to put words to express our gratitude!
Since the gofundme started roughly 21 days ago Kaitlin started medication to attempt to manage this beast of a disease. Unfortunately she hasn't responded to the medication at this point. She has steadily progressed with her symptoms to the point where her speech is now slurred, the drooping in her face is constant, she can't walk without assistance, her ability to swallow is worse than it has been and she has shortness of breath when speaking simple sentences.

She had a follow up appointment yesterday with her neurologist. As a result of the increase in symptoms we were sent to the emergency room and she has been admitted to the hospital for at least two days. They did another CT Scan (this time of her chest), performed respiratory tests (every 6 hours) and began the first round of treatment of IVIG last night. As you are aware she currently has no insurance. She has applied for it; however the waiting period is 45 days. This treatment is $10,000 not including the costs for the hospital stay.
To date your generosity has helped tremendously by paying for medications, a couple of her bills, purchasing a wheelchair and a few visits to a primary care physician. All things that I couldn't have done or paid for without the help of donations. I'm truly grateful for that!
Please continue to pray for her and please continue to share her gofundme. If you're able to please continue to donate.
May God Bless each one of you for Blessing us thus far with your kindness and support.
Today we are thankful for each one of you! Happy Thanksgiving!
~Danielle Strother
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$4,830 of $10,000 goal

Raised by 79 people in 3 months
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