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Our Story

On May 23rd, 2000, our sweet Hannah entered this world as a BEAUTIFUL healthy baby girl. The day she was to come home, it was found that her heart rate was very low. She stayed for an extra night for monitoring as no infections or other symptoms were found. After 6 months of cardiology care including EKG's, Echocardiagrams, and check ups, it was determined that Hannah's heart was functioning properly and no problems were found. Hannah grew up as a very active young girl who loved to jump on the trampoline, chase her pets, play with her two older sisters, and play softball with her friends. Hannah's 16th year of life began normally. Then the day came where our world was turned completely upside down.

On July 11th, 2016, Hannah enjoyed a day at BOSS. BOSS, aka the Best of Summer Stock is a summer musical/acting program here in Decatur that Hannah had been a part of since the age of 8. She loved BOSS and this was tech week. After a day of dancing and singing, Hannah came home for the evening. Hannah wanted to take a nap, but her step dad asked that she stay awake in order to go to dinner. I was out of town on business.  Around 6:30 pm my husband heard a loud thud in Hannah’s room. My husband elicited the help of Hannah’s older sister, Erika. They entered Hannah’s room and found her on the floor gasping for air. Erika prompted Chris to call 911. They instructed Chris to do Hands Only CPR. The Decatur Fire Dept arrived and performed CPR and Used an AED in order to restart Hannah’s heart. After being transported to a local hospital, Hannah was then airlifted to St. Louis Children’s Hospital.

Hannah spent the next two weeks in ICU where the heart team worked to figure out these extremely rare arrhythmias. She endured several tests which culminated in her receiving an implanted Defibrilator on July 22nd. A few days later she was able to return home. Our world had been rocked.

We attempted to get our lives back to normal as the fall arrived. Hannah continued to struggle. In March of 2017 it was found that Hannah was in heart failure. It was around that time that several tests and genetic testing determined Hannah has a rare form of muscular Dystrophy, called Danon Disease. It is a mosaic type as Hannah is the only one in our family with this dreaded disease. Hannah’s meds were changed and we now started working with the amazing heart failure team at St. Louis Children’s/Washington University.

The summer approached and we tried not to think about the arrhythmias or the possibility that Hannah could have another Cardiac arrest or get shocked by the implanted ICD. That ICD paced her on many many occaisions. As the fall approached, it became clear that Hannah was again declining. On September 15th, 2017, Hannah was listed for Heart transplant after a grueling week of meetings and testing. She went home with a PICC line and on Millirinone. We tried to feel “normal” but it was impossible. On December 4th Hannah became very ill once again. She was admitted to Children’s. Her heart arrhythmias were gaining intensity, and there were no guarantees into what could happen. We were discouraged and terrified to go home. The team decided Hannah would stay inpatient through the weekend. Well we didn’t make it home on Monday as we anticipated. On Saturday, December 9th, we got the call that there was a heart for Hannah.

We were home in time for Christmas and we are so thankful for her second chance.

Liz (Hannah’s mother)

(I will forever be indebted to my husband and daughter Erika for saving Hannah’s life. Had they hesitated, Hannah would not have lived. In a cardiac arrest, the chance of survival outside of a hospital is less than 10%. Hands only CPR kept her alive until the Fire Department and EMT’s could take over. )


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