Looking at her glowing smile and ivory face, topped with strawberry blonde locks that many nine-year-old girls wish they had, you would never know that Maddie McLemore, 9, has lived her short life battling illnesses.
And if you talk to her parents, Doug and Emily, participating in the DaVita Kidney Awareness Walk, which will be held Saturday at Trinity Park in Fort Worth, means the family has made great strides in dealing with their daughter’s kidney disease.
“Us doing the 5K is a big deal,” Emily said.
The event offers the family an opportunity to walk side by side to raise funds and awareness for kidney disease.
And like it is for the McLemores, worldwide awareness is crucial.
According to the event’s Web site, www.kidneyawarenesstime.org, more than 26 million Americans are living with chronic kidney disease (CKD) and 90 percent of them don’t know it. The chance that an American adult has CKD is almost as high as an American woman’s risk of getting breast cancer. More than 70,000 Americans die annually from causes related to kidney failure. Still, chronic kidney disease is virtually unknown and not talked about today. The goal of the 2009 Kidney Awareness Run/Walk is to help change those statistics.
Until the first part of 2009 and from the time Maddie was only months old, the family didn’t know much about the disease. But Emily said coping with health issues and frequenting doctors quickly became common for the young family.
“Maddie was perfectly healthy for the first three months of her life,” Emily said. “But from the time she was four months old, we have faced a variety of health issues.”
It all started when she had a horrible, very rare reaction to penicillin.
Maddie was first tested for cystic fibrosis before she turned two, and a barrage of tests followed. Doctors at one point suspected she might have Lupas.
While it was obvious to her parents and a number of medical professionals that something was wrong, they did not know the prognosis was likely life altering until 2007. In June and July of that year, through the months that are usually filled with days at the swimming pool, trips to amusement parks and weekends at the lake, Maddie spent the better part of two months in bed.
That was the beginning of a summer of doctors and tests. Maddie wrote on a blog at http://faithhopeandart.blogspot.com, “I was so sick all I did was stay in bed.”
It all started with intense back pain. Mom suspected it was a simple case of muscle aches following swimming lessons. But then her daughter started to run a fever. At the doctor, when Maddie underwent a urinalysis. Her urine was the color of Coca-Cola. The doctor sent the sample for testing and just two days later Maddie saw a specialist. Emily made the trip alone since Doug was out of town.
“I was facing the fact that something was seriously wrong and I also discovered that Maddie had pneumonia,” Emily said.
From the summer of 2007 until February of this year, the family continued to frequent doctors, who suspected kidney issues. The McLemores dealt with recurring sicknesses but did not have a confirmed diagnosis.
The problem was that Maddie’s weakened immune system was not strong enough to allow for a biopsy, which was finally ordered in January of this year. The biopsy revealed that Maddie has IgA Nephropathy and is also battling another kidney disorder. One of the sicknesses is an auto-immune disorder while the second means she is immuno compromised.
“Her body is at war with itself,” Emily said. “Her body is fighting itself every day.”
According to www.mayoclinic.com, IgA Nephropathy, also called Berger’s disease, is a common kidney disease that occurs when an antibody called IgA lodges in the kidneys. This hampers the kidneys’ ability to filter waste and excess water from the blood. Over time, IgA Nephropathy can lead to blood and protein in urine, high blood pressure, and swollen hands and feet.
IgA Nephropathy usually progresses slowly over many years, and although some people eventually achieve complete remission, others develop end-stage kidney failure. No cure exists for IgA Nephropathy.
When Maddie gets sick, she finds herself in bed for days and until recently she could not participate in the things that make childhood fun. She plays volleyball and was recently allowed to again participate in physical education classes at school.
“I had to work in the library instead of participate in P.E.,” Maddie said.
And for dad, watching her childhood take the sideline is the toughest part of the sickness.
“The hard part is watching her unable to be a kid and do things kids do,” Doug said. “This year has been better since she has been able to play volleyball and take part in P.E. I think there are times when she looks at other kids and wishes she could do more.”
But even at a young age, Maddie is not focused on her problems. In fact, she has found ways to help others understand what living with kidney disease is like. In addition to participating in the upcoming walk, she has decided the importance and function of kidneys is going to be the focus of an upcoming science project. She also said she would like to become a pharmacist since she already knows so much about medications and illness.
As far as the life-long battle is concerned, in addition to mom and dad, Maddie has an army of friends and family at her side, many of whom will line up next to her Saturday. Little sisters Lexi and Kylie will go along for the ride as will three aunts and a slew of cousins.
Maddie’s team has raised 80 percent of their fundraising goal and the Stephenville family is encouraging locals to join the event. You too can participate by heading to Fort Worth to take part in the walk or by donating a few dollars to the cause - donations can be made online at https://www.kidneyawarenesstime.org/donateteam/maddie_mclemore_team/index.html.
“Join us,” Emily said. “Advance registration for the walk is free, and participants even get screened for kidney disease by The Kidney TRUST at the event at no charge. Join our team once you’re registered!”
For more information, log on to www.kidneyawarenesstime.org.