10/05/2026
💙💚Today was 2026 Celebrate Life Run/Walk. This is an annual walk put in by Mid-America Transplant as a way to honor donors, celebrate life with recipients, support those still waiting on transplant, and inspire others others to says yes to giving the gift of sight, mobility and life.💚💙
💚💙Pulmonary Hypertension has no cure, is progressive, and ultimately terminal. Once many ph pts have exhausted medication options to slow the progression of PH their only chance of survival is to receive a double lung transplant. PH was Haylee’s secondary diagnosis with the primary diagnosis, the cause of her ph being a Complete Arterial Ventricle heart defect. Most of the time when babies have a CAVHD shortly after birth the holes in their hearts can be closed before more serious conditions develop. In Hay’s case her CAVD went undetected until age 3 ½ which caused her to develop PH. Her ph made it impossible to simply go in and close the holes in her heart, she wouldn’t make it through the operation, as by her diagnosis time her ph had already advanced to a severe stage. We were told if the aggressive medication regimen did not improve her ph numbers and it continued to advance her only option may be to do a rare double transplant of both heart and lungs.💚💙
💚💙We of course were terrified at the thought of her possibly having to go through a life and death procedure. Our hopes were the medications would help improve her PH and we wouldn’t have to travel down the transplant road. We however were more than willing to take it on if needed as we would do anything to try and save Haylee’s life. This is when we began to learn more about transplant, so we would know more about what we may be facing, to support our PHriends who have or would receive new lungs and so we could raise awareness to the importance of being a donor. 🫀🫁
💙💚our thoughts were always only Hay being a recipient and never a thought of her being a donor. For the following reason , one we never wanted to believe treatment wouldn’t help, and two we always thought with her medical diagnosis she wouldn’t be able to be a donor. 🫀🫁
💚💙 Of course we didn’t receive a miracle and treatment did not work for Haylee and we lost her on February 11, 2020. The night she passed the hospital never asked if we wanted her to be a donor. Later that night we were stunned to receive a call from Mid America Transplant asking us if we were willing to have her donate. I told them that she had already been taken to the funeral home, thinking it was too late for her to donate. They said that was no problem as they could pick her up there and still harvest donations. I then asked “what about her conditions wouldn’t those disqualify her for being a donor ?” They explained there would still be several donations she could give. It wasn’t even a second thought then we knew Hay as she always did in life would want to help people anyway she could. We agreed to her becoming a donor.💚💙
💙💚They were able to harvest Haylee’s corneas, knee cartilage and heart valves. Since we found out Hay helped improve the mobility of someone with the gift of her knee cartilage and she gave two people the gift of sight, a 56 year old female from CA and a 19 year old male from CA. I wrote a lengthy letter sharing with them the extraordinary soul that Haylee was, unfortunately their forwarding info was not made available which often is the case for cornea transplants. We are disappointed and would have loved to share who Hay was beyond her generic deception of a 7 year old female from MO. Also we would have loved to find out who her recipients were beyond theirs. I instead choose to share the letter I wrote here so others may be inspired to reach out to their donor or recipient. 💙💚
💚💙 Hay was simply the best person ever. She was kind everyday to everyone. Our hearts have been filled with love hearing how She's touched so many lives. We are so proud and know she is so happy she was able to give someone the ability to see the beauty the world has to offer. At the beach she once said “sissy, sit down and enjoy what the God gave you!” We can only hope that her recipients have been able to do just that and watch the waves crash into the sand. 🌊💙
💙💚Today was a beautiful day to honor Hay and walk in support of other donor families, in celebration of new life for recipients, and in support of those still waiting to receive their gift. We hope by continuing to share Hay’s journey she may inspire others to follow her lead and make their last act their best act. Give the gift of mobility, sight and life.💚💙
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