NEW KENT — Although a doctor in Maryland thinks he knows why 7-year-old Maddie Hays is suffering from continuous breakouts of rashes and swelling, her mother is nervous it's another dead-end diagnosis.
"We recently took her to a rheumatologist in Maryland and he's pretty sure she has lupus," said Erin Hays, of New Kent. "He thinks, too, that she has other co-existing problems that are exasperating it.
"I really want this to be it because I want to know what it is and I want this nightmare to be over for her, but I just feel in my gut that it's not lupus," Hays said.
"I've just been told so many times by doctors that they know what she has and then it's not it. I just am waiting for the bottom to fall out again."
According to Hays, her daughter's "flare-ups," which include a red, swollen face, have been baffling doctors for the past 10 months. She first started showing rash-like symptoms at about age 2, but they went away shortly after.
Maddie went without symptoms for years. But in November 2013, the flare-ups came back with a vengeance, and have since progressed nearly every day.
Hays says during the episodes, the 7-year-old's face turns red and swells, almost erasing her facial features. At its worst, Maddie's lymph nodes swell, her eyes swell shut, she gets a fever and fatigue, and her nose bleeds, her mother said.
Maddie calls the rash "hot and itchy."
Kristin Autry remembers when she first saw Maddie's symptoms while the family was living in Alabama.
"The family had joined our church and Maddie had her first flare-up," Autry said. "Her face and nose were red, but it wasn't until I saw her swollen lymph nodes that I panicked."
A lymphoma survivor herself, Autry said she encouraged Hays to immediately take Maddie to a hospital.
"I just kept thinking, 'I can't let this baby die,' " she said.
Hays added that one of Maddie's more concerning symptoms is that she cannot fight off infections and has had MRSA (methicillin-resistant Staphylococcus aureus), a serious bacterial infection, on her face in the past.
Earlier this month, a rheumatologist explained to Hays that although her daughter had had some negative lupus tests in the past, elevated numbers at her age almost always mean a positive diagnosis, and that she has other symptoms that often coincide with lupus, including hypermobility.
"He started her on lupus medicine, so we are just watching and waiting to see if they help," Hays said.
Aside from the tentative lupus diagnosis, Maddie was recently given patch allergy tests at another out-of-state hospital, which resulted in the discovery that she is allergic to gold, nickel, titanium and sulfur, and is light sensitive. Following another examination, other doctors found that Maddie's adenoids, soft tissue in the naval cavity, were infected and needed to be removed.
"We were told that this could cause her chronic infections and maybe makes her flare-up worse in her face," Hays said. "We're hoping that when she gets them removed (this week) that it will help her not get sick as much."
In the past, Maddie has tested positive for Porphyria, an allergy to light, and was told that light sensitivity is a contributing factor to lupus.
However, until Maddie's symptoms can be controlled, she is not allowed to go outside until dusk, Maddie's father said. Maddie is still doing homebound instruction so that her parents can keep an eye on her flare-ups and the medication's effect on her body.
Since Hays created a "Hope for Maddie" Facebook page that chronicles Maddie's health, and since Maddie's story made the news, the family has had an outpouring of support from the community.
"People have been so generous, donating to help us pay for Maddie's medical bills, emailing us with ideas of how to help her, and sending Maddie cards and well wishes," Hays said. "Her teacher even had her second-grade class send get well cards, and she loved that."
Maddie especially likes the cards made by children and stickers, her mom said.
"It means something special when it's from another child," Hays said. "She really brightens up."
Hays herself has been uplifted by kind words from strangers who encourage and commend her for doing everything in her power to help her daughter.
"It really means a lot because sometimes I wonder if I am doing enough, especially when she has a flare-up and I feel like there's nothing I can do," she said.
Maddie and her family have received so many well wishes and monetary donations that Hays has set up a post office box just for Maddie-related mail.
The Hays family is also currently selling "Hope for Maddie" bracelets online and has started a GoFundMe page to help offset Maddie's medical bills.
Thousands of dollars in medical bills have piled up from the numerous ER visits, hospital stays, and appointments with specialists in an effort to find an answer to her flare-ups. It is especially hard when the doctors are out-of-state, said Hays.
"The last trip I took, it was just me and my four kids and we had to eat, have a place to stay, drive up there, and see the doctor. That adds up, but I have to do what's best for my child," Hays said. "If I can afford it, I am going to try to find her all the help she needs and the answers."
For more information on donating, purchasing a "Hope For Maddie" bracelet, or helping the Hays family, please visit http://www.gofundme.com/hopeformaddie or the "Hope for Maddie" Facebook page.
Well wishes and donations for the Hays family may also be sent to P.O. Box 94, Providence Forge, VA 23140.
Martin can be reached by phone at 804-885-0040.