The Princess Story

My name is Shelly Mattingly. I am the founder of The Princess Foundation. Many of you ask me why we started this foundation. In order to understand why- you must first hear my story about the "very first princess"...

On November 15, 1995 Victoria Elizabeth Mattingly, whose name means Victorious Gift from God, came bouncing into our lives. It was love at first sight. She was a child full of energy and love. She never met a stranger and every one who knew her loved her. Victoria's life was full of happiness even with her physical trials due to her rare disorder, Encephalocraniocutaneous Lipomatosis. At one month of age she developed hydrocephalous and had a VP shunt placed. At age three she had a stroke and spent time in rehab. She developed epilepsy shortly thereafter.

During all of these Victoria never stopped being Victoria. The doctors said she would not walk and she ran. They said she would not live a normal life and she was in a traditional classroom. She could say her alphabet and spell her name at age two. She had a beautiful voice and would sing for people often. She beat all odds and became a very normal, happy child.

On March 8, 2001 Victoria came home from school complaining of headaches. We called her neurosurgeon and all agreed that it was a malfunctioned shunt. However tests showed that she had an inoperable tumor on her brain stem. This tumor had developed at some time within the past year. The tumor was malignant.

From that moment on I never left Victoria's side. I enjoyed every moment with her.

We had three chemotherapy treatments before having to be rushed to ER at Kosair Children's Hospital by ambulance. Victoria wasn't breathing regularly and wouldn't even move. Her neurosurgeon, the wonderful Dr. Gregory Nazar, was called in. He walked into ER and took a needle and immediately drained fluid through Victoria's shunt. No painkillers, no sedation. Immediately after the fluid was drained Victoria began to sing. She loved to sing and on a regular basis serenaded those around her with such classics as "How much is that doggy in the window.." All of the ER docs and nurses came in the room laughing and clapping. They couldn't believe it! Everyone had thought she would be on a respirator in ICU before the end of the hour. God is so good! We did not know it at the time but that would be Victoria's last chemotherapy treatments.

We were released the next day but at home Victoria was getting worse.

She wasn't recovering as well as in the past. We took her back into the hospital and it was found that the tumor was producing a thick protein like substance that was clogging her shunts and not allowing the excess fluid to drain from around her brain. We couldn't keep taking her into surgery after surgery. Her body was not getting enough time between surgeries to recover. So they decided to just drain the fluid manually as needed on a regular basis rather than depend on the shunts to drain it. I asked the doctor for another MRI to be done to determine if there was any change in the size of the tumor. At first they did not see a reason but I told them that something felt terribly wrong to me. As her mother I just knew when something was wrong. I learned to trust my instincts early on regarding the health and welfare of my children. They agreed and the MRI was done and it showed that the tumor had grown an astonishing 40% in just three weeks. This realization stunned everyone.

This tumor was a very aggressive malignant tumor that could not be treated. Together my husband and I made the decision to take our baby home. Hospice would then take over the care of our lovely little baby.

No more surgeries, no more chemotherapy.

Victoria was asked if she had a wish. She said, "I wish to be a princess." We were running out of time and were unsure if The Dream Factory could come through in time. Our friends got together with others in the community and surprised her with a Princess Tea Party. A limo filled with her favorite characters came to pick her up and whisk her off to a magical evening taken straight out of one of her storybooks. We were taken to Glendale Crossing Gates Bed and Breakfast, Jim and Patti Stewart owner and operators. We were met there by friends and family who were waiting the princess' arrival. A horse drawn carriage was there for the Princess and she was crowned, Princess Victoria Elizabeth Mattingly.

She received a key to the city, Elizabethtown, KY. She got her own cell phone with unlimited usage by Cellular One, and much more by various businesses in the community. A friend of the family sent her a storybook containing the story of the princess and the pea along with a pearl necklace for her to find under her mattress when she awoke the next morning. Her day came to a restful end but not before watching herself on the local television stations. WHAS-11 did a wonderful job covering her story, they even recorded her getting ready for her big day!

The next morning she awoke and found her pearl under the mattress and shouted, "Look Mommy, I really am a princess!" Of course, I always knew she was.

Victoria was invited to ride in Pegasus Parade with Lt. Governor Steve Henry and his wife, former Ms. America, Heather French Henry in the Pegasus Parade in Louisville, KY. She rode adorned in her princess dress and crown. People from the crowd called out, "Where's the Princess? Hello Princess Victoria!" She stepped up to the call in true princess fashion with a wave worthy of the queen herself! She would call out to them saying, "Hello, I am Princess Victoria! Happy Derby Day!" I will never forget that precious face turning to me and saying, "Look Mommy! All of my friends have come to see me in my parade!" Yes Princess Victoria, they did.

The Dream Factory in Louisville, KY was to provide transportation to Orlando FL where Victoria would see the castle, Cinderella's castle. The day before leaving we needed to have her fluid drained so we met the doctor at the hospital for the procedure that was to take only about a minute. As nurses held Victoria down, again with no painkillers and no sedation, the doctor attempted to drain the fluid with a needle.

Victoria tried to be strong but the doctor was having trouble getting the needle into where the fluid could be drained. Finally after many attempts the doctor looked up at me with tears rolling down his cheek and said, "Mom, I can't do it. I have to stop. This is hurting me as much as it is her." I asked him what to do. She was supposed to leave that next morning for her wish trip. He said to go. Give her the wish. Make her happy. With tears in everyone's eyes we knew this would be the last time Victoria was to come to the hospital.

We flew to Orlando and were treated like royalty by Give Kids the World, a wonderful organization devoted to fulfilling the number one wish of terminally ill children, to visit Disney World. Victoria had the time of her life and met Barney, Minnie and Mickey Mouse. In her private time with Barney she told him, "Barney, you get me through it all."

The wonderful time with Victoria came to a screeching halt when only after four days Victoria became lethargic and could not be awakened. We arranged for an immediate flight home. Victoria's last meal was eaten the day after returning from Orlando, on Mother's Day, at the Cracker Barrell in Elizabethtown, KY (one of her favorite restaurants). She quickly lost all strength and soon became paralyzed. She lost her vision and her ability to speak. Seizures were common because she couldn't swallow her medication.

In one of our precious moments together, I asked Victoria who was going to come and take her to heaven. Was it going to be Jesus or an angel? She said, "Yes Mommy". I asked her which one. She said, "That one" as she pointed at the head of her bed. I told her to tell him thank you for taking care of my baby and she looked up with a smile and said, "Jesus, my Mommy says thank you!" The realization of her savior standing right beside her provided a comfort to me that is hard to explain.

The morning of June 4, 2001 I awoke early and for awhile it was just me and her lying there together. As I held her close, I sang one of her favorite songs, "You are my sunshine, my only sunshine. You make me happy when skies are grey. You'll never know dear, how much I love you. Please don't take my sunshine away." I look at her lying there beside me, tiny and helpless. I wanted so much to run and escape the death that was around the corner. I cried out to God, "No don't take her yet, I am not ready!" My baby, my life...how would I survive without her with me?

As I lay there crying and wishing to go back in time and live all of those wonderful days with her all over again, I realized that this is not the end. I softly whispered in my darling's ear that I would not let her spirit die. I would not let what she lived for die. I promised that I would continue the fight. I would share a love for others just as she had done. I would share the love of Christ to others. I remembered how happy she was when someone accepted her Savior into their heart. She would sit right up in her sick bed and say, "Now they will live in heaven with me and Jesus!" I promised her that her little sister, Jessica would know the Christ that she loved so dear. With that promise she took a deep breath, looked up into her darling daddy, Kenny's, eyes and went home.

Victoria was taken to Kappel Funeral Home in Lebanon Junction. Mr. and Mrs. Kappel are some of the most kind people I have ever met. They truly care about the community they serve and they provided such love to my darling Victoria as they prepared her for our final goodbyes. The last night of visitation I was alone in the room with Victoria as the funeral home was clearing out for the night. Mrs. Kappel, Becky, came over to me and asked me if I wanted to hold Victoria. I was amazed that she would offer me something so special and wonderful. I told her I would be scared that I would mess her up and cause her not to have an open casket at the funeral at the church. She said if I messed her up...she would fix her right back. With tears flowing I told her I would love to hold my baby one more time. She went to the assitant and told him to close the doors and not allow anyone else to come in the room. No one came in, not even my husband. She carefully opened the beautiful white casket and picked up my baby girl and brought her over to me. She laid her in my lap and for a few moments she was mine again. I sat there and rocked her and once again sang, "you are my sunshine, my only sunshine, you make me happy when skies are grey, you'll never know dear, how much I love you, please don't take my sunshine away..." She was so beautiful and looked so at peace. To see her and know that she was at that moment dancing at the feet of Jesus was amazing! I loved her so much!

That night as I was struggling for sleep, I became so upset with the realization of what had happened. I thought I would lose all control. I thought surely I was going crazy. I felt a small hand touch the side of my face and I heard the faintest whisper in my ear. "Shh, Mommy, don't cry. It is okay, I am okay. I am with Jesus now. Just like you said! It is so beautiful Mommy. Now sleep mommy..."

That is my story. You see it is because of a promise made to a lovely little girl that the foundation was born. It is in her memory that we crown these little girls. It is with all of the love that I have inside for my baby girl that I give and continue to give of myself in order to make a child happy, even if just for a moment.

The Princess Foundation was born out of sadness but it is used to bring joy. I bring glory to the memory of a beautiful child by crowning these little girls, Princess. They truly are princesses, indeed!