Elizabeth’s Story

We realize many of you know of Elizabeth’s life, but for those of you who don’t, here is a little history.

Elizabeth, our oldest daughter, was diagnosed with an ependymoma brain tumor in 1992 at 2 1/2 years old. She had a successful resection of the tumor and then underwent aggressive chemotherapy for eighteen months.

After chemotherapy, the sky was the limit! Elizabeth seized life and did it all. Over the next five years and for the first time, life proceeded normally. She played softball and soccer; she took Irish dancing lessons, and piano lessons.  Elizabeth loved horseback riding, skiing, and biking; she loved it all!

When Elizabeth was ten, doctors realized a chemotherapy drug she received destroyed her lungs and were told the devastating news that she had an incurable lung disease, pulmonary fibrosis.  Elizabeth now needed a double lung transplant and was immediately put on a transplant list at Johns Hopkins University Hospital. Throughout that year we traveled the country meeting with experts looking for a cure to no avail.  As her health deteriorated, she was rushed to Johns Hopkins Emergency to monitor her failing condition.  Miraculously, because she was there at that time, lungs became available that she matched and she was given a second chance at life and underwent a double lung transplant the night of April 8, 2001!  Elizabeth’s “second” birthday was born and she started her next journey, living life!

Life went back to a new kind of normal.  She was back to school, was out with friends, Bethany Beach, visited family, and best of all, made trips to her favorite place, NYC, with family and friends.  Unfortunately, after four years, she developed chronic rejection, a common condition with transplant recipients, starting the slow, downhill spiral that ultimately took her life.

Through those last years, there were happy, appreciative moments, but also sad ones involving many long hospital stays, painful procedures, tests, IVs, daily medicine intake, and the increased need for oxygen.  It wasn’t easy, but Elizabeth endured it all with courage, determination, and humor, never letting go of her ultimate goal – living!

The year 2008 was especially difficult, as she spent more than six months of the year in the hospital specifically to gain weight and prepare for a needed transplant #2.  But even through all this, within the halls of Johns Hopkins Hospital, we witnessed the love and selflessness of Elizabeth through her interactions with other patients.  Instead of staying in her room, she would visit patients unable to leave their rooms, visit with them, watch tv, or do arts and crafts.  Elizabeth became a source of strength to other patients and to her.  Eventually, Elizabeth’s room became the “hang-out room” where she shared takeout meals with the patients, movie nights, and many laughs.  So many children were alone, but with Elizabeth, they weren’t.

Family and friends were a constant support to Elizabeth who showered her with love, time, and gifts.  She received so much and always appreciated this, as it helped to make her medical journey just a little bit easier.  Because of this, she would walk the halls of her unit looking to give away gifts to patients who received less.

So, to keep Elizabeth’s spirit of giving alive, the EAH Foundation would like to perpetuate her memory by always looking to help families facing financial hardship due to cancer or chronic illness with the means to cover medical expenses, patient needs, or family expenses.  By helping those in need, we can keep Elizabeth’s spirit alive: