“One day at a time, one smile at a time”

Every once in a while you meet a truly extraordinary person. A person who’s compassion, strength, and passion for life truly inspires you. I met one of those people when I encountered Melissa Welker. For Melissa, it was her son.

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In July of 1996 Melissa became a first-time mother to son, Andrew. Melissa began to notice that as Andrew grew he was sick more often than normal. She was told repeatedly that the problems were viral or needed antibiotics, but nothing seemed to help. Through her persistence, she finally convinced the doctors to do further testing on Andrew. It was finally discovered, at the age of 2 months old, that Andrew was born with a congenital heart defect.


Shortly after Andrew’s diagnosis, Melissa found she was pregnant again. Andrew’s sister, Brittany, was born just 9 months after his diagnosis.  Now, not only was she watching her baby go through countless procedures, she was a single mother of two – working to support and fight for her children. Looking back, Melissa remembers that even from a young age, Brittany and Andrew were always extremely close. While they often fought like typical siblings, they shared an “unusual brother-sister relationship” that she was always grateful for. They were always supportive of one another, relied on each other, and were passionate about the same things.

Over the next 15 years, Andrew would undergo 14 open heart surgeries. He was in and out of the hospital with illness and procedures, having pacemakers and defibrillators put in to try to repair his heart. Meanwhile, Melissa “didn’t want to keep him in a bubble” and did her best to ensure that Andrew had a normal childhood. He was as active as he could be and Melissa made sure he had every opportunity to “be a kid”, including having special heart guards made for him. She was often condemned by other parents for allowing him to do simple things like hang out with his friends or play sports. There were times he would fight to go to doctors or follow his treatment plan, but Melissa remembers after each time he would always take time to say “Thanks mom”.

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At an early age, Melissa had suggested the possibility of a heart transplant for Andrew, but at the time heart transplants were still very new medicine and not an offered treatment for Andrew’s particular defect. In June 2011, that all changed. Andrew went into severe heart failure. The doctors finally recommended a heart transplant, with the reassurance that it would “improve his quality of life.” In July 2011, a heart became available for Andrew, and it seemed like their prayers had been answered.

Andrew’s heart donation came from a 11 year old girl named Blair. While she was playing outside, she was shot and killed by a careless person firing a gun in the distance. Melissa said  she remembers crying as she sat in the waiting area, while her son underwent his 15th open heart surgery for transplant. Crying, not out of fear or worry for her son, but out of devastation for the mother who had just lost her baby. She said, “It was the hardest part.” After surgery,  things became even more complicated.

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“People never tell you about the ugly side of being an organ donation recipient.”, Melissa recounted with a long face. Whenever someone receives an organ transplant, the body tries to reject the organ and strong medications are be used to counteract the rejection. Andrew began his rejection treatment immediately. However, the medications did not work the way they should have for Andrew and his body continued to reject the donated heart.

Over the next 4 years, Andrew battled with numerous complications in relation to his donation. Among other illnesses, he contracted diabetes from the transplant, lymphatic cancer (which was cured with a bone marrow transplant), and his other organs were endangered due to complications from the rejection medications. Although the reasons were different, he continued to spend exorbitant amounts of time in the hospital.

In 2014, Andrew moved to Texas with his girlfriend and continued treatment there. On October 31, 2015, Andrew passed away in his home. At the time of the his passing, he was looking at a second heart transplant, kidney transplant, and liver transplant. The rejection medications had not only hurt his donated heart, but also his other organs. At the age of 19, he was taking 22-35 pills daily, giving himself 20+ insulin injections per day, and struggling with numerous other medical problems. Out of his 19 years of life, between surgeries and stays, Andrew spent approximately 9 years of his life in a hospital.

andrewDespite his struggles, Andrew was an incredibly positive person and was always trying to make others smile. However, Melissa recounted with tears in her eyes, in his moments of reflection, he would often ask his mother, “Why?”.  This was her biggest struggle, and her only response to him was, “I didn’t know. No one told me.” When I asked Melissa if she would do it all over again, she hesitated but ultimately said yes. Andrew had to deal with a whole new plethora of medical problems because of the organ donation, but he also got to experience four more years of life. She was able to take him on vacations, to his first Cubs game, and make so many more memories with him. Most of all, though, she got to hug him, kiss him, and watch him grow for four more years. “Was it worth it? Absolutely!”

Since Andrew’s passing, Melissa has become very active with many organizations for organ donation, both locally and nationally. In addition to her wish to donate her organs after death, she is also a registered living donor! She preaches not only the importance and necessity of organ donation, but also shares the aftermath of transplant. She feels that, even though she would do it all over again, she was not fully informed of the possibility of complications. Often times, the quality of life for a donation recipient does improve, but not always.

ANdrew-9.pngIt has been two and a half years since Andrew’s passing. Despite losing many friends and dealing with the hurtful words of others, she was able to turn to her husband for support. She says he has been her “rock” through everything. She often visits Andrew’s “quiet spot” to reflect, share things with him, or celebrate events. Melissa said therapy and support groups have also helped her keep her head up. Her granddaughter, Jaidyn, was only a year old when Andrew passed, but Melissa says it’s almost uncanny how similar the two of them are. So much so that it was sometimes difficult to be around her granddaughter when Andrew first passed. She and Jaidyn are very close now. Melissa shares stories of “Uncle Andrew”, and they often visit Andrew’s “quiet spot” together.

Melissa’s motto is “One day at a time, one smile at a time.” This is the mantra she lives by and it is evident in all she does. Although I saw her in vulnerable moments as she shared her trials, her sheer strength and passion for her cause was a shining beacon. You never truly recover from the loss of a child, but rather than allowing her grief to consume her, Melissa uses it to give herself purpose.

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Melissa encourages everyone to become an organ donor.  She will be telling her story and sharing how you can become an organ donor at the IMH Monthly Community Education program at 5pm on April 24th in the IMH Community Education Center.

 

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