Hearts Up: Not All Heroes Wear Capes.

On Monday, January 6th 2025, after 644 days of waiting for a second heart transplant outside of the hospital, Evan hugged his sister and dogs and told them goodbye, as he and his dad made the heart wretching drive back to Cincinnati Childrens Hospital to live until a heart becomes available. Jessica, Evan's mom watched in absolute fear knowing that her family will once again be "living separate lives." Ryan, Evan's dad, will have to leave his employment, so that he can be with Evan full time at the hospital all while Jessica finishes teaching the 2024/2025 school year, cares for Avery and their home. There are no words to describe the financial strain that has fallen once again upon the Strauss family. So many of our family and friends feel utterly helpless right now, therefore Bill and I have created this Go Fund Me, to help others help Evan and his family alleviate some of their financial burden. Each day as I prepare my students for dismissal, I say to them "Hearts Up" and we all place our heart hands high up in the air and I proceed to tell them how incredibly amazing our day was just because they were there with me. Tonight, I ask all my friends and family to say "Hearts Up" and place their heart hands up high in air and help show Evan and his family how much love and support they have. Please take the time to read Evan's Heart Journey below and follow his story on Facebook at

https://www.facebook.com/groups/346891301604749/?ref=share&mibextid=NSMWBT

❤️ Evan's Heart Journey❤️

Written by his Mom

Evan was born with HLHS. He had his first open-heart surgery, the Norwood, at 4 days old. He had his second open-heart surgery, the Glen, 3 months later.

At age 2.5, he ended up needing a tricuspid valve repair. The repair failed, and he had to have the valve replaced 4 days later. That weekend, he had a stroke. He lost his ability to speak, and all movement in his right side. He went from being a 2.5-year-old with the vocabulary of a 4-year-old to a giant baby. The hospital suggested inpatient rehab, but we chose to take our son home. Instead, we did outpatient speech, OT, and PT 4 days a week. After a few months, Evan was so much better. Today, even if you know he had a stroke, you can’t tell!

Unfortunately, Evan’s heart function never recovered. We began the transplant process in November 2018. After all the testing, he was to be listed as a 2, which meant he was stable enough to wait for a heart at home on oral medications. However, days after he was admitted and bumped to a 1A, which is the top of the list.

His condition declined quickly, and they were to meet on a Wednesday to conference on a Berlin heart surgery. We were devastated. Transplant was already a terrible heart break... and now he would have to have another open-heart surgery before he even did that?!?

Then our miracle happened. The night before the conference, we got the call that there was a heart for Evan!!! So, instead of getting a Berlin, he got his new heart! His new heart was his 5th open heart surgery.

He did great with the surgery and recovery. We were all set to go home, but then they discovered fluid around the heart during his biopsy. They had to take him in to place a drain. We later learned that he had PAMR2 rejection, or antibody rejection.

Evan had plasmapheresis 106 times, IVIG 63 times, bortezomib (chemo) 19 times, and rituximab once to treat the rejection. He was inpatient 5 months, then discharged to the Ronald McDonald house for a month. During that month, he had treatments 5 days a week. Once home, he continued treatment twice a week at first, which decreased in time. Eventually he was able to stop his treatments and was deemed rejection free!

Thanks to his donor and her family, Evan was finally able to be a “normal” kid. Evan could run and play without getting so tired... he was no longer our little blue boy, and instead had beautiful pink lips and fingers... he got to go to school... he played basketball… he did Ninja Kids... he did Karate... he had so many hopes and dreams and plans!!!

Then, in December 2022, Evan began to show signs of heart failure. He had swelling in his face. He was getting tired so easily when doing Karate. He was even asking to be carried again. On February 12, 2023, Evan was admitted to Cincinatti Children's Hospital. We learned that he had severe coronary artery disease and would need to start the process for re-listing for heart transplant. Due to cellular rejection, aspergillus, fluid retention, needing to be on a ventilator for a week, weakness, etc., the listing process was tough. In fact, we were told that he would likely not make it to transplant. Once again, we thought we were going to lose our son.

But, after 52 days in the hospital, Evan was officially listed for transplant status 1A on 4/5/23! He became very stable and on May 16, 2023 we decided to take Evan home to wait for a new heart. He was doing so well that he even began going to school three days a week, with cardiac rehab on the other two days.

In December 2024 Evan began to have stomach pain, chest pain, and would get tired very easily with activity. We are currently in the hospital for a weight adjustment to his milrinone, but are likely staying until transplant… Ryan and I feel that his body is telling us that it’s time.

This is just the “big” stuff that has happened with Evan… he has had several other surgeries… line placements, vocal cord surgery, pacemaker surgery, dental surgery, etc. It’s crazy how much he’s been through in his little life. His road has been rocky (to say the least) every step of the way. We’ve cried countless tears and are constantly filled with so much anger... and a fear that literally feels suffocating most days…

Ryan stays with Evan most of the time and is hoping to continue working part time. I am still teaching full time and traveling back and forth from here to the hospital. Avery’s has gymnastics practice three days a week, and her team just started meet season so we will be very busy to say the least.

This journey (by the way I hate using the word “journey”... I feel it implies that this has been peaceful) is hard, but it is also wonderful. There are lows that take a piece of us each time, but there are also highs that bring unimaginable joy. He is an inspiration to so many people, and we are so PROUD to call him our son.

We aren't sure what the future holds... but we do finally have HOPE. For that, we are truly thankful.