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Mother desperate to find cure for daughter’s mystery illness

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RICHMOND, Va. -- The parents of seven-year-old Maddie Hays said they hoped their daughter's story would spread far and wide. They hoped someone, a doctor perhaps, would recognize Maddie's symptoms and offer a cure to the mystery illness that has plagued the child.

"Maddie is miserable," mother Erin Hays said. "She has seen specialists in rhuemetology, immunology, dermatology and infectious disease. We are currently waiting on an appointment with hematology/oncology. "

Maddie first broke out in what her mother called a "mystery rash" when she was just two years old. That rash went away.

The rash came back last Fall, with a vengeance. It is so large, it has caused painful swelling on Maddie's face. When the swelling gets very bad, her mother said, Maddie's eyes are forced to close.

Maddie Hays (PHOTO: Hays family)

Maddie Hays (PHOTO: Hays family)

Erin Hays said she was terrified that if Maddie did not get to the right doctor soon, her condition will continue to worsen.

"All the doctors and specialist we have seen think whatever is plaguing my daughter is extremely rare and yet no one can figure out what is going on," Hays said. "It is attacking her body, scaring her face and causing lymph nodes to swell. It is making her afraid to be seen in public. She currently cannot attend school."

Maddie Hays (PHOTO: Hays family)

Maddie Hays (PHOTO: Hays family)

Maddie's three younger siblings have never shown signs of the illness. For years, Maddie saw doctors in Alabama. Since her family moved to New Kent County three weeks ago, Maddie has started to see doctors at VCU Medical Center.

Her family has set-up a GoFundMe page to raise money to help offset their medical bills.

"My family will be more then appreciative for any financial help donated, but more importantly please help us find her the doctors she needs so we can get Maddie better!," the frustrated mother wrote.

You can contact the Hays family through the Hope for Maddie Facebook page.

16 comments

  • adventuringmama

    Dr. Rapaport, Los Angeles. http://www.rapdermbh.com/index.php?option=com_content&view=category&layout=blog&id=46&Itemid=104 Helped my son. Seen this compilation of symptoms and the randomness of flares over and over again over the past 15 months. Especially if any type of steroid – topical, oral, or iv was used to treat the rash. Look at itsan.org as well. Please. Might give you peace of mind. We had one parent who took her child to every one of the specialists you have – even had a lymph node removed. Her son is doing better now. MUCH better, just like mine.

  • ChemE

    She may be sensitive to RF/electromagnetic radiation. Get a microwave meter that measures 0-8 GHz radiation. New Kent County has a very powerful microwave radar installation:
    Radar/Call Sign ROTHR – Virginia
    Model AN/TPS-71 ROTHR
    Max Pulsed Power (Watts) 1,000,000
    Gain (dBi) 100.0
    Maximum ERP 100,000,000
    Frequency (MHz) 30
    Latitude 37.56543
    Longitude -77.02465
    FIPS 51127
    County New Kent
    State VA
    Comments/Source http://fas.org/nuke/guide/usa/airdef/an-tps-71.htm.

    Research @ darkmattersalot

  • Melissa

    Of course it may be something more complicated, but it never hurts to offer suggestions. I had 3 occasions that my face and lymph nodes swole very similar to the pictures above. Only on the third treatment of steroids did we finally discover that I was highly sensitive to nickel and was suffering from metal poisoning. The culprit was a necklace, many are nickel plated, and I was touching the necklace and then inadvertently touching my face and eyes throughout the day. I was unrecognizable during each of the swelling/rash episodes. Good luck finding out what is causing this to happen to your daughter.

  • Barbara Njuguna

    I have had some of the symptoms she has because I have a severe nickel allergy, but I don’t even know if that is the only thing she has. I feel think her immune system is very low and it could be a number of things. I feel that they should keep her in a quarantine room and see if her body is allergic to anything there. If it still acts up then she has a disease because her immune system is attacking her body and it isn’t environmental. When thought the room is quarantine she could be allergic to the medical supplies, or the food she is eating. This is very unfortunate, I wouldn’t wish this on anyone.

  • Sheri

    It looks like an allergy. I would suspect you have already looked at the usual allergens. Perhaps its not something she is eating or using on her body such as a soap or lotion. Perhaps its something she touches such as the perfume her mother wears and she gets it onto her face when she gets a hug? Perhaps its a toy or blankie or even a seatbelt in a car that rubs occationally on her. I have severe allergies of all sorts and it took a creative way of looking at things to figure out the cause. Doctors weren’t a lot of help unfortunately. Does this child only get the rash on her face? I would take a very close look at anything this child might possibly touch prior to breaking out.

  • Sarah

    I have a wheat sensitivity/allergy that causes similar issues when I eat too much of it… My face, especially around my eyes and mouth/lip swell up. The skin around lips crack and it all itches like crazy!!! It would be worth a try!!!! I hope you find what is causing it soon!!! Praying for you and your family!!

  • Paula

    My Daughter has this condition, it has no cure but it can be controlled. After many failed attempts to solve this problem with doctors/naturopaths it occurred to me that this was very like a cold sore gone mad, so I started giving my daughter regular doses of L-Lysine, it is what I use to control cold sores, it works for shingles too, since giving her this immune support she has had no outbreaks at all, these outbreaks were so often at one point she was never at school, I have photos of her that look exactly like those above, it broke my heart to see another child suffer through this and I hope that the results for her are the same as with my own child because this is too horrible for any one to have to endure, too much sun and stress usually cause coldsores/shingles to develop so keep that in mind when teaching her to prevent further outbreaks. Hope this helps :)

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