AJ’s medical journey began at the time of his birth when his doctors suspected that he had Down Syndrome. Just a short while after he was born, AJ choked while breastfeeding and began to turn blue and was sent to the neonatal intensive care unit (NICU). As his condition worsened, he was transferred to the University of Iowa Hospitals & Clinics (UIHC) where his family learned that he had Hypoplastic Left Heart Syndrome (HLHS), a birth defect that affects normal blood flow from the heart. UIHC expressed concerns that AJ’s case was more complex than they were equipped to handle, predicting that AJ had less than a 5% chance of survival and made the decision to transfer him to the Children’s Hospital of Philadelphia.
It was at only two-weeks old when AJ received his first open-heart surgery and was given a tracheostomy and gastronomy tube to open his airways. Following his surgery, AJ was transferred back to the UIHC until he met the requirements for his second open-heart surgery. It wasn’t until he was eleven months old that AJ finally went home; since he was born, AJ has continued to have ongoing heart catheterizations and procedures to repair his airway.
AJ and his family were familiar with Make-A-Wish® Iowa and their mission but hadn’t considered the possibility of AJ receiving a wish. AJ’s family shares that it wasn’t until he continued to grow and defy all odds that it began to sink in that AJ may be able to enjoy a wish of his own. When AJ and his family learned of his wish eligibility they were overcome with emotions.
“It was a roller coaster of emotions for us,” AJ’s mom, Amber shares. “We were excited and thankful for the opportunity and experiences that it would bring and optimism for how his wish would help impact his life. We felt sad that we were in a position that qualifies him to due his medical diagnosis. But also, happy that he had defied all odds placed in front of him and then back to excited because he was so deserving of a new adventure.”
Due to his medical condition, AJ wasn’t able to verbally ask for what he wanted so it took a bit of brainstorming and considering all of the things that he enjoys. His family shared that he is not a fan of crowds and loud noises, but has always loved the outdoors, trees and car rides. When considering these things, they ultimately decided that a camper would be the perfect wish for AJ. A camper was the perfect wish for AJ because of his love for being outdoors and the ability to easily travel with his medical equipment.
With his camper, AJ and his family are able to stop and enjoy the sights along the way to his docator appointments in Philadelphia and have a place to stay when traveling. In preparation for his wish, AJ and his family took the time to shop for things to keep in the camper, prepared their car to be able to pull the camper and planned future camping trips.
“The day we went to pick up the camper we took AJ and his sister on their first camping trip,” Amber remembers. “We took videos and pictures like crazy. We were all excited! AJ spent hours going inside and outside to look at the trees. He really was living his best life. The Make-A-Wish Iowa team had also sent a sleeping bag and chair, a lantern and some light up marshmallow sticks for us too. We camped more weekends than we spent at home this summer. With COVID-19 we didn't have the trips to Philadelphia for appointments that we normally would have, but we also couldn't risk doing many things in public. The camper gave us the ability to get out, enjoy time as a family and see new sights.”
AJ’s wish for a camper has created a positive impact on his medical journey, making travel more accessible and quality time spent with his family more frequent. AJ and his family shared how thankful they are for the opportunity to be able to go places as a family without the burden of worrying how to pack all his medical equipment. After the Derecho storm this past summer, AJ’s family was left without power for two weeks. It was AJ’s camper that helped them through this difficult time as they were able to pack their things and move to a place with electricity to run his oxygen and monitors. With the camper, his family didn’t have to panic about batteries, how to keep AJ cool or how to prepare his food without power.
Supporting Make-A-Wish Iowa gives kids like AJ the opportunity to spend quality time with their family and explore the world around them and so much more.
Your gift will support Make-A-Wish Iowa and together, with our over 400 volunteers state wide, we can give wish kids the ability to experience the magic of life-changing wishes. The wish experience not only touches our wish kids, if uplifts their family, the community and has a positive impact on an often difficult medical journey.