Despite Daily Combat with Immune Deficiency , This 20-Year-Old's Life Inspires Everyone

By Robert R. Schwarz

 "The battle never ends, but I keep fighting "

            On an August night in Wisconsin's  North Woods , live music was about to flow from a cabin and resound across Palmer  Lake. The Kania-McDermott family had just finished dinner, and now five of them were tuning their instruments. For Mary , the mother, it was a flute; daughters Molly, 13 , a violin,  and Meggie 20 , another violin . Meggie's brother, Matthew, 24,  readied his guitar while  Andy, 23, a  son by  guardianship ,  made a few quiet beats on a drum.  There was a "one- two- and-a- three" from Mom ,  and the music began. Tonight it was Irish songs sung by Dad and Grandma and Grandpa.

            Family humor and laughter continued beyond the sunset. No television, no phone calls.   The nearest town, Minocqua (pop. 1,200 ) , was a one-hour drive, and a distance  beyond that was  the Lac Du Flambeau Indian Reservation.  The family' hometown of Arlington Heights, Illinois was, for now, beyond the far horizon. It was the perfect family getaway, especially for Meggie.

            Meggie is a sophomore at St. Louis University and is aiming for a doctorate in physical therapy . In high school she was team captain of varsity gymnastics and coach of  Special Olympics,  and she was   awarded for her outstanding leadership, citizenship , and sportsmanship in gymnastics . She also found time to perform in variety shows and     made the  Prospect  High School honor role for three consecutive years. Her pace didn't slow in college when she became  director   and music   arranger  for an acappella  group and began writing  a blog about her experience in Washington, D.C.

            Since birth, Meggie has been afflicted with a serious  immune deficiency ;  many of the antibodies which people have to fight off infections are  either missing or not working in Meggie's body.   ( What causes this is not yet fully understood by doctors. )  Meggie requires daily and very expensive medication  and must cope with chronic  infections ( she's had 11 surgeries to combat those infections) , skin abscesses and eczema  , warts, fatigue, asthma, and upper respiratory  infections.  Every three weeks she  undergoes an intravenous infusion of the drug Gamunex . Her family has battled long with the insurance company and hopes it will continue the drug benefit.  

         When we sat down to talk in her parents' home , Meggie was wearing blue jeans and her university T-shirt . She is a pretty young woman with brown eyes and hair and stands five-feet-two. She is quick-witted, confident and  naturally cheerful , causing one to wonder how someone like Meggie has been able to sustain the daily combat with a major affliction like immune deficiency  for so many years without losing step  towards  career goals and so many extracurricular activities.  So, I asked her about it, particularly what posed the greatest challenge to her.

     

Doing a "straddle jump" at Palmer  Lake

   " It's the emotions of feeling great one day and not so great the next and getting sick a lot and always having to catch up at school, " she says.   " It's hard to work ahead because you're stressing yourself  out more than you have to. But I've learned from a young age to work a lot because I know I'm going to get sick again.  You just have to keep pushing. "

        Has she ever been tempted to just quit ? " Yeah, I have. There's a lot of stress not only on you but on your family, friends, everyone .  You just can't get down on yourself and say ' O,  woe is me ! '   I thank God for everything that 's  been given to me . There are so many people out there who don't have medical care or insurance. "

         Meggie credits her mother for much of her positive attitude,  but it is faith and prayer that keep her going, she says. She attends Sunday Mass and  prays each weekday  morning while riding a shuttle to class from an apartment she shares with another woman student.  At night before going to bed she prays the Rosary and   this prayer ,  a combination of three prayers.   

        Thank you God for this day, and for all of our friends and family. Now I lay me down to sleep I pray, dear Lord, my soul to keep. Four corners of my bed, four Angels around my head. Angel of God, my guardian dear, to whom God's love commits you here. Ever this night be at my side: to light, to guard, to rule, to guide, Amen. 

        All this gets her through the day and helps her "stay at peace ", she says .  "I know I can't control everything. "  Meggie admits there was a time when she got angry and questioned  the value of her spiritual regimen. " But found I found peace through the community of my church."

        Meggie's father , Walter Kania , was  a structural engineer and died from cancer at age 33 when Meggie was  two years of age. At this point  during our interview, Meggie's mother  paused from a kitchen task to relate an anecdote from a Christmas Day Mass  which the family attended three days after the death of Meggie's father.  "Meggie  pointed at the Christ figure on the altar cross   and said,  There's my Papa's friend.   Everybody just cried because it was so beautiful. She said this without any memory yet of her father's passing, and that was pretty cool. Even as a two-year-old, she had this beautiful sense of faith. "

       Her mother four  years later   married  Brian McDermott, who today is  a manager at the Elmhurst Park District.  Meggie's mother directs four school bands at  St. James  and the Teen Ensemble at the church's 5 p.m. Sunday Mass. To help  with the  insurance co-pays for Meggie's meds, she has a private studio where she teaches flute and other instruments.  Molly is Meggie's sister . The family's guardian son, Andy, and Meggie's biological brother, Matthew,  became best friends while in 8th grade. Andy has lived with Meggie's family for the past nine years. When Andy's  mother died years ago,  Matthew  told his parents , " We need to take care of him. We are the only family who knows what he's going through. I will clear half of my room for him." 

Helping Mom in the kitchen

        A major concern for the entire Kania-McDermott  family is the looming possibility of the  insurance company withdrawing  Meggie's benefit of her  Gamunex  infusions,  which are administered to her in her apartment every three weeks by a health care nurse.  Those infusions cost from $3,000 to $13,000 each month.  It took a year of haggling before the  company would approve the benefit . Meggie's mother says that  her family was originally  told the drug was "medically unnecessary" and if approved it would be on an "experimental basis. "  But 24 hours after  CNN television invited Meggie to be interviewed ,  insurance officials  gave their  full  approval.  In May, 2013, Meggie was invited by  the Immune Deficiency Foundation to the nation's capital to speak  to House and Senate staff about the Patient's Access to Treatment Acts of 2013.  This pending legislation would limit the  amount of insurance  co-pays for medically necessary treatments .  " I hope to be able to advocate for the IDF program  , " Meggie wrote later on her blog   (http:slupt.blogspot.com /2014/06/slu-pt- student-meggie-kania ) .

Staying Happy

What makes Meggie happy ?  She chuckles and  replies: " Friends, family, and working out. "  For more than two years she's been dating a young Addison, Illinois man she met while both  were working as camp counselors for Special Olympics.  "It's a long distance relationship," she says,  "but we're making it work. "  As for sadness, she points to the  past violence in Ferguson, Missouri , a short distance from her university.  Meggie has little time for movies or television ( a set is absent from her apartment )  but will dip into  a mystery novel with a Christian faith theme  by Jodi Picoult. She loves chocolate and peanut butter ice-cream , anything that's   pumpkin flavored, and her mother's mashed potatoes.

       Meggie and her family and in-laws this August will likely gather again in that cabin in the woods. Meggie's  will once more  observe—as she exclaimed  in our interview— how "today the kids work so  extremely well together ."  Sometime during those upcoming  halcyon   days on Palmer Lake,  she'll  see the evidence—perhaps during  all the family  music—she'll be reminded of how Meggie's   long trek of trials and tribulations have actually  enriched her family's life. She is always ready to tell you that , yes , human suffering can produce profound blessings.  

        When the music and singing stops in the cabin on that next August night,  there will, of course , be prayers—perhaps the 23rd Psalm to remind everyone of that  Good Shepherd who restores  souls and nourishes them in the midst of enemies—even one named immune deficiency.

          

Mother and daughter

  Any one with a serious health issue  who has read Meggie's final words in  her recent blog is apt to remember  them : " Although there have been challenging times in   my life, I have always found a way to keep moving forward.  You can't change the past, all you can do is look at the positive aspects and search for a deeper understanding. ..My intention is to not only to create a better quality of life for myself, but also for all of those patients struggling to receive their treatments. The battle never ends , but I keep fighting. "

            And on that August night as the loon bird's last cry is heard on Palmer Lake and the family is falling asleep one by one,   their  favorite Biblical verse—it is etched on the   headstone of Meggie's father—might  whisper to them: I can do all things through Christ who strengthens me . (Philippians 4:13 ) 

THE END

All comments are welcome.

rrschwarz7@wowway.com

© 2015 Robert R. Schwarz