Tania Michele was born on a Sunday night, December 28,1980, weighing 6lbs. 5oz and 18 1/2 in. long. She was so little and had lots of dark hair, that everyone who saw her thought she was a doll.  Her daddy described her as a miniature of me. As she grew up, people would comment on how much she looked like me and that would upset her, as she just wanted to be her own person.  Tania stole the hearts of everyone who knew her including her big brother Joe, who was two years older.  Joe became very protective of his little sister, especially in school, as some kids made fun of her and he would come to her defense.
 
When we went for Tania's two week checkup, her Dr. told me she needed to be seen at Children's Mercy Hospital by a cardiologist because her heart rate was too fast. I took her to CMH three days later and that is when our lives changed forever. We met Dr. Rajan and after running several tests that day, said she needed to be admitted, as she was in congestive heart failure. They wanted to do a heart catherization the next day to make a proper diagnosis. The catherization showed she had 2 holes in the ventricular wall, Ebstein's anomaly and an enlarged right chamber. When they did x-rays it showed that she had congenital scoliosis and Sprengel's deformity of the left scapula.  Dr. Rajan, started her on lasix and warned us that Tania might code blue, which meant we could lose her or she would have to have surgery. At that point I told him that I had waited 8 yrs. to have a little girl and that God would take care of her. He smiled at me and said he hoped I was right.
 
At eighteen months, they did another catherization and found that one hole had closed and the other one was very small and would likely close on its own. Even though the VSD's were better, it was then that they found she had Wolf-Parkinson-White, which meant that she had an extra electrical current in the heart. They told us they didn't think this would give her any trouble until she was in her thirties.
 
When Tania was six months old we started seeing Dr. Schmitt in Orthopedic Clinic for her scoliosis and Sprengel's deformity. In August1984,Tania had her first major back surgery which was for Sprengel's. Even though the surgery went well, it gave her other limitations. She had no muscles in the left side of her neck, so she had to turn her body to the right when someone was talking to her. Even with all the medical problems she had and check ups at the Cardiac, Ortho, and ENT clinics, Tania tried to never let her health stop her from what she wanted to accomplish. Her WPW didn't give her too much trouble until she was in the fourth grade and she tried to play basketball. It was too much for her and on further testing, we were told she could never participate in competitive sports. In 6th grade, Tania started to play the flute and excelled in it all through school. She practiced all the time and eventually learned to play the open hole flute, the piccolo, and the obo.
 
When Tania was in high school she liked working in the Counselor's office and since she couldn't play sports, she became the Manager for the girls' basketball team, so she could earn her letter in sports. When she was a junior she became a cheerleader and loved every minute of it. Tania liked and did a lot of things. She was in Girl Scouts, volunteered at CMH one summer, worked at the YMCA and loved taking care of children of all ages. Tania started working for Westlake Hardware in Independence when she was sixteen and continued to work there even when she went to college. She enjoyed that job very much as she was a people person. Everyone she knew at Westlake loved her and misses her very much. In April1999, when she was a senior, Dr. Price in Orthopedics told her that her scoliosis had progressed to 60% and that surgery had to be considered. Tania decided to have her surgery in April, so she could be back in school for her senior activities. Tania wanted to walk down the aisle with everyone else and she did just that.
 
Tania had decided she was going to college and worked very hard in high school to achieve the required grades she needed. She chose to go to Missouri Western State College in St. Joseph. In August 1999, I helped her move to the campus. It was a very exciting time for her and a hard time for me. I had to accept that Tania was not my little girl anymore, but a young adult who had dreams and goals of her own. While she was at Missouri Western she was on the Forensics team, played in the Woodwinds, was in a play, worked at the Barnes and Noble Bookstore on campus and helped at the games selling school items. She also worked at a Baptist daycare after classes one semester. During her freshman semester she volunteered as a Big Sister to a little boy in the Lee's Summit School District, which meant she drove down here twice a week to spend time with him.
 
Tania had a time adjusting living with three other girls, but when she became a friend to someone she would do anything for them she could. A good friend of hers told me that Tania would show up at her apartment and have something for her and when she was asked why she did it, her reply was "I thought it would look good on you." She always thought about other people so much. I can remember when she would come home for a weekend, I would come home and there would be a vase of flowers or a gift for me. Tania would mail me cards to just let me know she loved me.
 
In January 2001, Tania applied for an Internship at Walt Disney World. In April she was accepted and was so excited that she changed her major to Communications and Public Relations. In May of 2001, after the semester had ended, Tania had some trouble with her heart that put her in the hospital. Her heart rate dropped to a very dangerous level of 45 to 54. Dr. Hulse advised her that the best help would be to put a pacemaker in and they would set it to stay at a comfortable rate for her. That was done on a Friday, the end of May. In June, she tried to work at a Girl Scout Camp, but it was too much and she had to come home.
 
In the middle of July, Tania and a friend drove to Florida. She started her internship in August. It was one of the happiest times of her life. She met so many college kids from all over the world. Some became very close to her. Tania worked in one of the stores at Cinderella's Castle and had a wonderful time. One of her friends told me that I will never know how many lives Tania touched or how many pictures of her are sitting in homes around the world. She said that Tania was very popular with the guests. While Tania was in Florida, she was able to get reacquainted with her cousins and my older sister. Even though she had a wonderful time in Florida, she was sick a lot and was in the ER quite often because of her heart and her asthma. In the middle of December, she came home for a friends' graduation. While she was home she saw Dr. Hulse and he advised her that she should come home. Dr. Hulse wrote a medical letter requesting that she be given an early release so she could be home close to her family and her doctors. Joe went to Florida and drove her home because she just wasn't well enough to do it by herself. 
 
In January 2002, Tania returned to college, but she wasn't very well. We were in the hospital every month because of the WPW and then in April, she had emergency gall bladder surgery. That seemed to help for a couple of weeks and then the first part of May she just couldn't seem to have any strength. She got through her finals and went to the doctor on May 14th and that is when they told her she was in mild heart failure. She had completed 3 yrs of college at this point. On Wednesday she went to NKC Hospital for a test and was in so much pain that they admitted her to the hospital. We were there until the following Monday, when we transferred to CMH. The doctors did all the same tests and said that the left side of her heart was not pumping the fluid into the body and that it was all going to her abdomen. They tried some new medicine and thought it would help strengthen her heart. They discharged her on June 2nd.
 
On June 13th, Tania went for a follow up check up and Dr. Hulse put her back into the hospital immediately. On June 17th, they did an echocardiogram and told us that her left side was pumping less than 20%. There was nothing they could do unless she wanted to be transferred to St. Luke's and be considered for a heart transplant. Tania looked at the doctors and told him that she was not going to have any more surgeries. Earlier in the day Tania had told me that she was too tired to fight anymore and that she wanted to go to heaven. For the last ten days of her life Tania was so at peace with her decision that she gave all of us who knew her the strength to get through it. Her faith in God was so strong that she knew that He was with her and was preparing a place for her in His mansions and that He would be coming for her soon.
 
The last two weeks of Tania's life were the hardest I will probably ever have to bear, but God was with me and gave me the strength to be there for my daughter. On Thursday June 27, 2002 at 1:10 A.M., Jesus came and took His child home. He gave me the strength to sit beside her and be with her until she went into His arms. I realized that God loans us His children to teach, love and nurture for a certain length of time and He loaned me Tania for 21 1/2 years.
 
Tania loved people of all ages and was willing to help anyone who she came in contact with and even in death she wanted to help anyone she could by becoming a donor. Even though I will never know whom she helped, it gives me great pride to know that a part of her lives on in someone else. Tania loved so many people and touched so many lives. She is greatly missed by everyone who knew her. Tania was very close to her grandmom (my mother), her father, her big brother Joe and so many other people that it is impossible to name them all. She also loved her two dogs.
 
Tania also believed that "LIFE GOES ON" no matter what we are faced with. Tania knew that I would never leave her until she was safely in the arms of Jesus. I thank my God that He let us have Tania for 20 yrs longer than expected. Even though she is no longer with us in person, she will be forever in our hearts. Tania was a living example of how great our God is now and forever. I will forever miss her hugs, but I know that we will be reunited someday in Gods' mansion. Tania will always be my "little girl" as well as my "angel". Tania lived by the verse in Psalm 139:14, "I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well."
 
My son, Joe, is doing well and I am so very proud of the man he is today.
 
I hope by reading Tania's story it will help others to see that all things are possible through Christ. www.chdfamilies.org/taniasheart

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