COTA for Reagan's Journey

Our Story

“I remain confident of this: I will see the goodness of the Lord in the land of the living.   Wait for the Lord; be strong and take heart and wait for the Lord.”  Psalm 27:13-14

Reagan was born on May 20, 2007, with what was thought at first to be a heart murmur.  After some precautionary testing results came back showing a more serious issue, Reagan was flown from San Angelo, TX, to Children’s Methodist in San Antonio at 2 days old where she was diagnosed with dilated cardiomyopathy. Dilated cardiomyopathy is a disease of the heart muscle where the heart’s ability to pump blood is decreased because the heart’s main pumping chamber, the left ventricle is enlarged and weakened.  With the use of medication, Reagan’s heart was able to function at 50%, and she was released to return home to San Angelo at ten days old.

By the beginning of December her heart function had decreased to 35%, and it was decided that Reagan would be referred to Texas Children’s Hospital in Houston right after the holidays.  The week before Christmas, she became very ill and was hospitalized in San Angelo. On the afternoon of December 20^th at the age of 7 months she coded in her hospital room. She was flown to Houston that night with her heart functioning at only 5%, requiring a heart transplant to live.

With the help of the iv drug milrinone, Reagan regained a little bit of heart function and even was able to come off the ventilator. She would one week later be listed with a 1A status on the transplant list and her wait would begin for a donor heart.  Mom remained with her in Houston as Dad and her 3 older siblings would return to San Angelo, 8 hours away.  Reagan would be in and out of ICU for the next 6 weeks until the family received the call at 11:30pm on Valentine’s Day that a heart had been found for Reagan. On Friday, February 15, 2008, at the age of almost 9 months Reagan received her second chance at life.

Reagan’s heart remains healthy at this time, but she has had to deal with post-transplant lymphoproliferative disorder due to the immunosuppression drugs she takes.  She has had to take 3 courses of weekly IV treatments for PTLD since 2013 to prevent full blown lymphoma.  Each time she has had to be inpatient at Texas Children’s Hospital for every transfusion due to a severe allergy to the drug used in treatment.  Her family continues to make the trip to Houston from San Angelo several times a year for regular checkups and yearly heart caths and biopsies.  They have recently been introduced to COTA to seek help for continued expenses associated with Reagan’s transplant and lifelong medical needs.

This year Reagan celebrated her 16th Heart Anniversary!  Her family gives praise and honor to their Father in heaven and His Son Jesus Christ for walking every step of the way with them and providing for their every need.  God did not guarantee Reagan’s survival through this, He after all allowed His own Son Jesus Christ to go to the cross to pay for the sins of all people, but He has graciously and mercifully allowed Reagan’s life to be preserved through His provision of a physical heart 16 years ago.  Her family desires for her story to be a platform for the Gospel of Jesus Christ to all who hear.  They thank everyone who has loved them, continued to pray for Reagan and have come alongside in her continued heart journey.

 ^“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort,  who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.  For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.”  2 Corinthians 1:3-5

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.