By Steve Flairty
NKyTribune columnist
When ten-year-old Maddie Blankenship talks about being a leader, as she did recently as a guest speaker for Grace Gorrell and her leadership studies class at the University of Kentucky, she is quite eloquent.
“My friends and I say we are ‘Team Maddie’ and we make it matter,” she said on that day. “Making it matter means helping others, doing random nice things to brighten someone’s day, and having a good attitude. It also means living in the moment and enjoying each second, never ever taking a day for granted.”
She went on to mention that leadership is even more than actions, it’s “your attitude and heart.”
This Georgetown youth, a popular and inspiring student at the downtown St. John’s Catholic School, is much more than good with words, however. She has credibility because of the way she has tackled adversity, which started back as a three-month-old infant when she underwent a liver transplant.
Doctors say the possible reason for the failed liver was because of an unconventional form of severe combined immunodeficiency (SCID).
Maddie shared some information about how the condition affects her.
“My body just doesn’t make an immune system, so every week I do an IV infusion that gives me an artificial one,” she said. “Plus, I am on all kinds of germ precautions all the time.”
As challenging as SCID has been for Maddie, things got worse a few years back when it was discovered that she also suffers from, yes, another unconventional form of a malady called Fabry’s disease, a rare genetic disorder characterized by damaged genes. The disease also inflicts burning pain in her arms and legs.
Largely for that reason, her leisurely physical activities are much more limited than in the past.
“She went from running 5K races for fun to not being able to run the length of a football field,” said Stephanie Blankenship, Maddie’s mother. She walks and engages as much in sports as she feels like she can, she often pays for it later with the extreme discomfort, according to Stephanie.
With the health issues, she misses considerable time in school, but the staff and students at St. John’s are very supportive.
“My school has really been good keeping up with me if I’m not there,” said Maddie. “They’ll send all the work home and help me if I need it. It’s really good to have that kind of school when you are sick.”
Gorrell has gotten to know the courageous youth quite well and has high admiration.
“I met Maddie several years ago through one of the students in my class,” she explained. The student was a member of a community service team that had won four front row tickets to a UK basketball game.
“They asked if they could donate the tickets to Maddie and another kid dealing with major health challenges,” Gorrell continued. “I met Maddie and her mom at the game and immediately fell in love with the sweet spirits of her and her parents.”
Impressed by Maddie’s example, some students in Gorrell’s class collected money to give her a bike for Christmas, and the gesture provided even more to admire about Maddie. The doctors told her she might not ever be able to ride it because of balancing issues. A year later, she won a medal riding that pink bike at the National Transplant Games.
That’s pure spunk.
At the games in Cleveland, Maddie experienced an exhilarating time of building community and growing in self-esteem.
“It was good for her and unique…there were all those other kids there who had transplants like her,” noted Stephanie, who emphasized the surprising positivity that many she’s met through her daughter’s health issues exhibit.
Maddie shared her excitement about meeting Abby and Chloe at the Transplant Games.
“In an instant, we became best friends,” she said. “All three of us connected over the same stuff we had wrong and all three of us had liver failures and it was easy to talk about it.”
I asked Maddie how she handles the continual pain. She mentioned several ways.
“I think of other things and I take the medicine. It’s a little of both,” she said.
And then she started talking about some of the activities she enjoys that partly distract her from the pain: “I love doing arts and crafts. I like to paint, I draw, I knit, and I do all kinds of fun stuff.” Her favorite school subject is math and she likes to cook. She engages with life in the best way she knows how, for sure.
Theresa Johnston, Butler, Kentucky, became a friend and supporter of Maddie while meeting her in the stands at a Kentucky basketball game.
“She has such an outgoing personality that draws people to her,” said Johnston. And though the two are not related, Johnston calls Maddie “#11,” the “extra one” of her ten grandchildren, while Maddie calls her “Granny T, my adopted extra grandmother.”
Many might think that the challenges Maddie deals with daily, issues such as wearing a mask for germ precautions (for which some people who don’t know her tend to stare at the sight), enduring intense muscular pain that stymies her ability to be physically active like her peers, along with the seemingly endless doctor and hospital visits would cause her some bitterness. Though she admits she sometimes wonders about her situation, her amazing mental frame of mind comes through in the words she speaks. She finds a way to cope, and calls her illness a “gift.” And why would that be?
“I believe it’s a gift because not everyone has this going on in their life,” said Maddie. “It can change your life for the bad, but no matter what, the person never changes. I hope by going through this illness it could someday lead to a possible cure so others would not need to go through it.”
A few days ago, Maddie got the call to come off the St. John School bench and enter the team’s basketball game. She had missed many games and played little the whole season; two chronic, serious health issues can understandably bring about such a situation. But on this day, Maddie would be the star.
She stole the ball from an opponent and took a shot. If she wanted to make the basket go in in a huge way, the people who knew her wanted it to go in even more so—and it did. The crowd, friends, and teammates waxed giddy with excitement and surrounded her with unabashed praise and emotion.
It was a special moment. Most likely, though, the display of support was one of deep appreciation for their observing Maddie’s daily demonstration of grace under pressure…her inspirational “gift” to those who know her.
Besides, that’s the kind of leadership that really matters.
For those interested in checking in on Maddie and her experiences or learning about unconventional SCIDS or unconventional Fabry’s disease, “like” her Facebook page, Make it Matter for Maddie https://www.facebook.com/makeitmatterformaddie/.
Steve Flairty is a teacher, public speaker and an author of six books: a biography of former Kentucky Afield host Tim Farmer and five in the Kentucky’s Everyday Heroes series, including a kids’ version. Steve’s “Kentucky’s Everyday Heroes #4,” was released in 2015. Steve is a senior correspondent for Kentucky Monthly, a weekly NKyTribune columnist and a member of the Kentucky Humanities Council Speakers Bureau. Contact him at sflairty2001@yahoo.com or visit his Facebook page, “Kentucky in Common: Word Sketches in Tribute.” (Steve’s photo by Connie McDonald)