Dawn's Rare Disease & Medical Fund

Aurora Dawneedoo Frascati is organizing this fundraiser.

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Hi Everyone! Thank you so much for taking the time to visit my page and hear my story... I am going to tell you about my current health and financial situation, as well as share several pics (some not so pretty- that's your warning)... Please make sure to read my updates as well, as this is an ongoing Fundraiser as my health is declining...
I am a very recently Diagnosed case of an NIH (National Institutes of Health) Rare Disease called Melkersson-Rosenthal Syndrome (diagnosed 9/14), and I also have another disease as well, called Ramsey-Hunt Syndrome (diagnosed 5/14). I also suffer from Fibromyalgia, and chronic pelvic pain. I will be losing ALL Medical coverage, Rx Coverage, And ALL Assistance, with the exception of $16/mo in food stamps, and my newly awarded ssdi payment monthly. HOWEVER, even though I applied for Disability in 9/2008, I was only awarded retroactive to 4/2013. The Government requires a 24 month "waiting period" before your "Medical coverage" kicks in, even though I have been found disabled, and the state has yet an additional 6 month "waiting period" before ANY medical benefits would be awarded. Because of these "waiting periods", and the failure of notification from the state, local and federal agencies involved, I was not made aware of this until roughly the first week of April 2015. And today is April 30th, 2015. My last day with insurance coverage, Rx coverage, etc. I have been trying to take this in stride, but unless I can show that I have put out $5,202.00 in "out of pocket medical expenses" from April 1, 2015 through 9/30/2015, I will be without the medications, doctors, specialists, and therapy needed to live with this Rare Disease on a daily basis. I personally Thank you for any support you can provide, as it is greatly appreciated. Even if you can not make a donation, just sharing My story will help spread the word about this rare disease, and hopefully make a call for more studies for those of us that suffer from MRS.

There are several pictures here, some before MRS, then some as recent as 5/7/2015 in an added update. The pics here will show what I looked like until February 4th, 2013- a 34 year old female with a compromised immune system, with both a Bells Palsy history- twice prior to 2/13, once at age 7, and again at age 17, and a history of Pediatric Shingles. Other than that, I was sick a lot- I would catch a common cold and carry it for 2-3 months! Then, what I thought was my 3rd episode of Bells in 2/13 turned out to be anything AND everything but that. And we are STILL without ANY form of treatment for me, as I also have medication allergies... Most importantly, I am allergic to NSAID's. NSAID's are one of the most commonly used treatments for MRS... One of the images is me and my Primary Care Doc- I will call him Dr K. He has been my biggest advocate, by far, and has even gone with me to see specialists, as I was beginning to think I was nuts- and with no thanks to these specialists, either. Everyone I would see (from Johns Hopkins to UMMC...) were telling me "Oh it's just another case of Bells and will clear up soon!", or "Do you see a counselor?" or just plain "We have no idea what is wrong with you, but when you get Diagnosed, call us!"- but we knew this wasn't just another case of Bells Palsy. I could FEEL the left side of my face, it HURT and was HOT to the touch. I was abnormally swollen from my face to my arm on the left especially at first, and was RED!!! I also had horrible sores in my mouth. I was also losing weight for no reason at all.

Then, the right side of my face went out (became Paralyzed) in April 2014. So here I was with Bilateral Bells Palsy (Facial Paralysis on both sides of the face at once)- which is Extremely Rare, and that FINALLY got the attention of some "higher up" docs and medical professors here in the Baltimore, MD area. I went through DOZENS of MRI/CT/MRA's, Ultrasounds, Lymph node Biopsies, Spinal Tap, EMGs, numerous labs and blood tests, mental evaluations, and so much more. I have some bilateral, frontal lobe brain lesions. Although non-specific lesions, they were not there when this all began 2 years ago. They showed up on the 2nd or 3rd MRI, early into my medical issues with MRS. They have multiplied, and there is now also abnormal areas appearing in my C-spine on my last MRI.

Now we are at a point of stand still again. It took over a dozen physicians, 4 hospitals and about a year and a half for ANY diagnoses. My case is different in that I have the swollen lips, just not often as most with MRS suffer from, but instead, I have facial swelling, facial paralysis, I can't open my mouth more than half an inch some days, I get ulcers in and around my mouth, and most recently, even one on my nose. I also have severe short term memory loss, speech slurring, and words coming out in the wrong order when I speak, and eye migraines. I also have tinnitus, or ringing in the ears, that lasts for days. I have lost approx 80lbs since 2/13 as well with very little change in diet. So Dr K and I have contacted NIH, NINDS, and NORD, but still have no treatment plan, or options, for me yet.

I can not thank you ALL enough for spreading the word abut Melkersson-Rosenthal Syndrome. With every share of this page, whether you can make a donation or not, another person learns of this NIH Rare Disease, and hopefully, if the right person sees this, there could be one more cause for a study, at the very least. I can no longer work, as dr appts are now my full time job... Please feel free to research MRS and RHS. I guarantee you will learn something new.

UPDATES: We have (Myself and my PCP, Dr.K, have made contact with BOTH NIH and NORD, but so far, have STILL no Treatment, Clinical Studies, or even an Evaluation, from ANY of these National Organizations. I have also been told that I would be able to see one of my specialists, the one that diagnosed my MRS, however, now I am being told by the "Gate Keeper" at his hospital that I will not be able to be seen by him unless I go in and am admitted via the ER. This will happen, and be yet ANOTHER financial resposibility, if I can not be seen otherwise in the next two weeks. I am in a full flare up of both diseases at this time, and in an incredible amount of pain, and chronically exhausted.

I am doing my very best to stay POSITIVE :) and to keep my head up throughout this rough time. I can not say "THANK YOU!!!" Enough to ALL that have Read, Shared, Given Advice, Listened, and Donated to me. You have no idea how much this ALL has helped me. Without your donations here, I would have had NO Rx's for the past 2 months, nor would I have been able to continue seeing my Primary Care Physician. I THANK YOU ALL SO VERY MUCH! Any help you can give is SO Appreciated. Thank you <3 <3 <3

***PLEASE BE SURE TO READ ALL OF MY UPDATES & SEE CURRENT PHOTOS, TOO! Thank you all again for being here <3 Dawn ***

The photo above is the red, almost Rosacia looking, rash I have daily from my diseases.

At my LOWEST weight in 7 years in the photo ABOVE, but you would never know it from the facial swelling and paralysis... I have now lost almost 100 pounds in the past 2 years from these illnesses and diseases.

The images above show my weightloss in just the first year before the MRS and RHS Diagnoses...

The photo above is one of the MANY VERY PAINFUL lesions I get in my mouth, on my tongue, lips, and even on my face...

Pic above shows my abnormal bilateral facial swelling and paralysis...

The MANY Faces of MRS and RHS... Me this morning, 5/7/15.

Me in 2008... Before MRS and RHS Diagnoses.

Another day of abnormal swelling and severe pain...

Another Many Faces of MRS and RHS. All are me below between 2/13 and the 11/14...

Myself with my PCP, Dr K. If you can't laugh, what can you do??? And I do believe laughter is TRULY the best medicine... It definitely helps on the tough days.

Showing an MRS Support group that I found. There was one member (Not me) and it was last active in 2008... I think that this speaks VOLUMES for the rarity of this disease.