Mallori Headley is an enthusiastic and adventuresome 3-year-old, usually decked out in pigtails, who loves to dance, play outdoors and ride her bike.
So when Mallori initially came down with flu-like symptoms in early January, her parents, Clint and Staci Headley of Brainerd, were concerned but not overly worried about their daughter.
But their usually cheerful daughter didn't seem to be getting any better. Not only did she have a lingering fever but she was developing redness and spots on her hands, arms, feet, legs and face. She began developing pain in her legs a week later and she couldn't walk. Her legs would shake as her parents would try to stand her up. She would scream, complaining that it hurt all over. Mallori earlier had been enrolled in Just For Kix, something she enjoyed, but had to quit after only six weeks in the program because she wasn't feeling well.
If you go
A benefit dinner and raffle is planned from 3-7 p.m. May 23 at the Brainerd Legion Club, 708 Front St., for Mallori Headley, the 3-year-old daughter of Clint and Staci Headley of Brainerd.
Mallori has been diagnosed with Hemophagocytic lymphohistiocytosis (HLH), a rare immune disorder.
The benefit is planned by family and friends to help pay for Mallori's many medical bills, including her weekly trips to Children's Hospital in Minneapolis for blood tests.
A spaghetti dinner will be served at the benefit. Cost is $5 per plate. Raffle tickets will be sold before and during the benefit.
Raffle items are still needed for the benefit. Those interested in making a donation or for more information may contact Shirley Williams at 831-4349, Sara Goble at 828-1899 or Kristin Erlandson at 839-2702.
Donations are being accepted to the Mallori Headley Benefit Fund at Mid-Minnesota Federal Credit Union, 13283 Isle Drive, Baxter, MN 56425.
To stay up-to-date on Mallori's condition or to leave a message for the family, visit Mallori's CaringBridge site at www.caringbridge.org/visit/malloriheadley.
"She's very spirited, she's very rambunctious," Staci Headley said of Mallori. "That's why seeing her motionless for days was really scary."
After multiple visits to doctors, the family was referred a month later to Children's Hospital in Minneapolis, where Mallori underwent a battery of tests, including three bone marrow biopsies, lymph node biopsies and many blood draws. Her liver, spleen and lymph nodes were found to be enlarged. Her tiny body now has many scars where the little girl has been poked and prodded by medical professionals. Doctors were concerned that she could have lymphoma or leukemia. Oncologists have now diagnosed her with macrophage activation syndrome and hemophagocytic lymphohistiocytosis, a rare immune disorder. In late March, a specialist from the Children's Rheumatology Clinic diagnosed her with systemic onset juvenile rheumatoid arthritis, formerly known as Still's disease. Staci Headley said the two disorders are basically the same diagnosis just from two different medical perspectives, from hematology/oncology and rheumatology.
Staci Headley pushed her 3-year-old daughter, Mallori, on the swings Friday at Baxter City Park. Brainerd Dispatch/Steve Kohls » Purchase reprints of this photo.
Since last month Mallori has been taking a liquid form of Naproxen twice a day and iron supplements and she's been feeling better, which could mean that the pain relievers are working and masking the illness or she's on the mend, said her mom. The family travels down to the Minneapolis hospital once a week for Mallori's blood draws and tests.
"There are so many unknowns," said Staci Headley. She said the best-case scenario is that after a few years of treatments, her daughter lives a long, healthy life. "The hardest part is not knowing, not knowing if we should prepare for the worst."
Despite her young age, Mallori does very well with her weekly blood draws, said her mom.
"She knows the whole routine. As long as she knows there's a Band-Aid and a sticker waiting for her when she's done," Headley explained.
Headley said she and her husband couldn't have survived this ordeal without the support from their family, friends and employers. She is a vocational case manager for adults with disabilities at Productive Alternatives while Clint, an Iraq war veteran, is full time with the Minnesota National Guard and based out of Cambridge. They have two other children: a daughter, Emma, 5, and son, Reece, 8 months.
Staci Headley crawled through a tube Friday at the Baxter City Park playground with her 3-year-old daughter, Mallori. Mallori has been battling a rare immune disorder since January when she came down with flu-like symptoms. Brainerd Dispatch/Steve Kohls » Purchase reprints of this photo.
The Headleys hope that Mallori will feel well enough to try T-ball this summer.
"We're just going to keep plugging away, I guess, and focus on happy things," Headley said with a smile.
JODIE TWEED may be reached at email@example.com or 855-5858.
Brainerd Dispatch ©2013. All Rights Reserved.