Madi's Story

Early on a June morning, 2019, Madison motioned for us to bring her a piece of paper and pen so she could write us a note.  Like many other days, Madi would write us notes and communicate with us the only way she could.  She had been on a vent for a couple of weeks, and was fighting so hard to regain her strength.  Each day was a challenge for her, and her lungs were growing weaker by the day.  In the midst of her battle, she would continue to communicate with us by writing us notes, asking for things, and wondering what day it was.  She would often ask about her meds, her tests, and when she could go home....she would always tell us she loved us.  That June morning was a special one, because her note did not include something about her own needs.  As she grasp the pen in her weak and shaky hand, she began to write the words "how is Adam?"   Immediately tears came to my eyes as I realized that even in her weakness, and during her own battle to live, she was still thinking of others.  Adam was downstairs on another floor recovering from his own bone marrow transplant, and Madi was concerned how he was feeling.  Madi and Adam began a friendship when they met at Riley Hospital both receiving chemotherapy treatments and they remained friends.  We always knew that Madi had a heart for other kids battling, but this just blessed us beyond measure and touched our hearts....she cared. She cared for others even in her own battle, even in her own weakness, even in her own fight for life.

I want to tell you who our daughter is.

Madison Isabella Moore is a hero. She is a fighter and a warrior.

She is a friend, and she is a champion.

On June 7, 2002, Madison Isabella Moore was born into this world as a strong, beautiful, and quite curious newborn.  She was looking around the room, checking out everything around her, the moment she was born.  Shortly after her birth, Madison developed breathing issues, and was transported to Riley Hospital in Indianapolis.  After a week long stay, Madison was released.  For one full year, Madison wore a monitor for her breathing and heart rhythms, just as a precaution.  As the years blew by, Madison's breathing issues resolved, and she blossomed into a very healthy and vibrant young child.  From the start, Madi always had a strong personality, and fought hard for the things she wanted. She made friends easily, and cherished those relationships throughout her life.  She loved her family, and especially her cousins and her big brother.  As the younger child of the group, she always wanted to 'tag along' with all the older kids...which often annoyed the older ones.  But as the years went by, and she grew older, she became the child that could hang out with the older ones, or play with the younger ones.  She just loved her family and always wanted to spend time with them.  

From a very young age, Madi had a strong faith and commitment to Jesus.  She began reading the bible stories, and worshiping at church.  She would pray and always ask the Lord to protect her family and friends, and would never hesitate to pray for someone at church.  She always talked about heaven and Jesus, and we were so happy at her love for the Lord. As she grew into a young woman, her faith grew stronger, and she began asking friends to church and youth group.  She loved worshiping with her friends, and always loved helping in any way with our church programs.  She was always participating in church outreach programs, and also prayed over thousands of prayer blankets that we gave away to the sick from our church.   She knew the power of prayer, and she loved her Savior.

In December of 2017, Madi began complaining of dizziness, rapid heart rate, and just feeling puney.  She started to look pale, and seemed to be very weak and tired for days at a time.  We took her to the doctor, and a flu test was administered and found to be negative.  Thinking it was a virus of some kind, the doctor informed us to bring her back in a few days if she didn't get better.  Only four days later, we took Madi back to the doctor after she almost blacked out in the shower.  We knew something was wrong.  Labs were done and it was determined she had dangerously low counts and needed to be transferred to Riley Hospital for children.  Once we were at Riley, a bone marrow biopsy was performed, and the news came back that afternoon that she had leukemia.  Our hearts dropped and I believe we were all in a state of shock.  Not only did she have leukemia, but she had one of the most aggressive, nasty types she could have, and we had no idea how this could happen to our girl....our girl who had only had the flu ONE time in her entire life.  It just seemed like a bad dream, but I couldn't seen to wake up from it.  We knew right then, we had to rely on our Lord, Trust in Him, and begin a battle of a lifetime.  Madi was so strong.   She cried, then she began her fight.  She put her faith in Jesus and said, 'I'm going to beat this...I'm going to be ok. And the battle began. Madi's first round of chemo began the next day and lasted 10 days.  We were told that the chemo didn't work, and that the cancer started to grow even more.  We prayed, we believed, and the next day, the Lord gave her a miracle.  The cancer numbers began to drop and the doctors were surprised.  We knew God was healing her, and we gave Him praise.   During this time,  however, Madi had developed a fungal pneumonia and was getting fevers reaching 106.6.  She began having trouble breathing, and had to be taken to the ICU and placed on a ventilator.  Two full weeks in the ICU, and Madi was finally healthy enough to go back to a regular floor.  We were so thrilled that the Lord had healed her and was restoring her.  

For the next 6 months, Madi underwent 4 more complete rounds of chemo to continue bringing her cancer numbers down.  In July of 2018, we were told the news that Madi was in remission...no cancer was detected!  We were so happy!  The next step with the form of cancer Madi was diagnosed with, was to have a bone marrow transplant.  The doctors had found her a donor from Europe that was 10/10 match for Madi and this young woman was so excited to help Madi.  August 31, 2018, Madi began her gruesome chemo regimen for 9 days to receive her bone marrow transplant.  The transplant went well, even though the chemo was so hard on her already fragile body.  After a short few days of some complications from the new cells, Madi was released in the first week of October, 2018 to head home.  The next several months consisted of twice per week doctors visits in Indianapolis, home health care nurses drawing labs and changing her dressings, and almost complete isolation to stay away from any potential germs.  This was a hard time for Madi because she missed her friends so much.  Around Christmas time 2018, Madi's immune system, although still weak, was getting stronger and her hair started to grow some.   She was bright and happy, and looking forward to getting back to her friends and school.  During her entire year at home, Madi had maintained A's through home bound school, and always kept in touch with her teachers.  She pushed hard to keep her grades good, and worked hard with her home school teacher to keep herself on track for the next school year.  She was so motivated.  

In March of 2019, Madi began to have some issues with her eyes being dry and having a burning sensation.  She still had her twice weekly appointments, and they started testing her for graft vs host of the eyes.  This is a condition were the donor cells begin to attack the new 'host' body and sort of reject the new body, causing a multitude of problems.  Her eyes got worse each week and a rash began to appear on her back, face and chest.  It was determined that she had chronic graft vs host disease, and she was placed back on steroids and many medicines to help control it.  Over the period of three months, the graft vs host became worse even while receiving treatment and other plans were considered to help treat it.  Madi began having seizures, which placed her back in ICU, and her body grew weaker from the steroids and other meds.  She fought hard to do homework, be with family, and keep her spirits up, but she struggled each day just to find some relief from her symptoms.  What amazes us is that throughout all that she went through, she always kept her faith in her Lord.  She would continue to pray, write in her journal, read her bible, and cry and ask God to protect and save her friends.  She wanted them to know Jesus like she did, and even though she was hurting, she always thought of them.  

One afternoon, Madi told me that she couldn't wait to become a nurse and eventually a nurse practitioner.  She told me that she wanted to help kids and make them feel better.  She also told me that she couldn't wait to be on the other side of the 'gift giving', and she giggled at the thought of going into those patient rooms and giving them a gift to lift their spirits.  You see, Madi had been blessed by so many gifts while she was in the hospital.  She always felt so special when someone would come in and bring her a gift.  She couldn't wait to do that herself and help others.  Many times during Madi's treatment, we would talk about starting a foundation so that we could give back.  In April 2019, Madi helped us name the 'Madi's Hope Foundation'.  She was excited to get it started and begin a journey of Hope for others.  

In June of 2019, Madi began to have difficulty breathing, and was eventually transferred to the ICU unit of Riley Hospital.  She battled so hard, and we worked so closely with the doctors to battle what they determined she had....graft vs host of the lungs.  Our faith in the Lord always stayed true, and we trusted Him with every decision.  Madi continued to speak to the Lord and she never gave up hope.  She communicated to us all she could over the vent, and wrote us notes daily about various things.  She even pushed herself and got out of the hospital bed, while on the vent, got into a chair,  and did physical therapy.  The doctors and nurses, along with all of us, were amazed at her strength.  And again, asking how Adam was while she herself was still on the vent battling, showed her love for others and great strength.   Sadly, despite our efforts, Madi slipped into a coma on the evening of July 5, 2019.  She didn't respond anymore to our voices or our touches.  We know that she could hear us, but no response was given.  Two days before she passed away, she moved her finger for her nurse, and blinked her eyes, and one single tear rolled down her cheek.   We knew that she was already with the Lord, seeing things we could never imagine, but we still prayed that a miracle would bring her back to us.  At 7:30am on Monday July 15, 2019, our angel, our sweet princess, our warrior, looked up into heaven and took her last breath.  All of our family was there, she waited on all of us to arrive, and then Jesus took her home.  I can't explain the feeling you have when you lose a child.  There's no way to explain the hurt, the desperation, or the immense grief that comes upon you immediately.  Our lives will never be the same and we know that our sadness and longing for her will never go away.  The peace that we do have, is that she is with Jesus in heaven.  This we know.  We can imagine her joy, extreme joy, that she is experiencing at this very moment.  The only thing that brings us peace is knowing that she is so happy.  Knowing that we WILL see her again brings some comfort, but the day-to-day living is so hard without her.  Weeks since her passing, we knew that we needed to move forward with Madi's vision.  However, we were unsure of how we could begin this foundation without her.  Then the question came to us, "How can we NOT do this foundation?"  We thought of how strong Madi was throughout her journey and this inspired us even more.  She pushed herself to do TV interviews, talk to reporters and photographers, all while being swollen and in pain from steroids.  She endured over 6 rounds of chemotherapy,  200 blood transfusions, multiple tests and scans, countless IV sticks, a bone marrow transplant,  and 3 ICU stays on a ventilator.  She did all of this without complaint, without anger, and without fear.  She was such an inspiration and such an example of unbelievable courage.  We know that she would be giving us all a pep talk, and explaining to us all that WE CAN DO THIS. Knowing this, we introduce to you, Madi's Hope Foundation.   A nonprofit organization created to spread hope in the face of uncertainty, to shed the LIGHT OF CHRIST in the face of darkness, and to extend a helping hand to those who need support and love.  This was Madi's dream, this was her vision.  We can't even explain how much we look forward to seeing her again in heaven, and being without her makes our everyday lives so difficult.  However, we must push through and honor Madi and her dreams of helping others, and this WAS her dream. 

Madi,

Until we see you again princess, we will help make your dreams of helping others come true!!

You will always be our brave warrior, our beautiful princess, our hero, and my best friend.

We love you, Madi girl.

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