Serenity's Story

On June 16th we lost the most precious gift of all our daughter Serenity June. We would like to take a minute to share our story. From the moment we found out we were expecting our hearts were filled with joy and excitement that our time had finally come that we were going to be parents. At our anatomy ultrasound we had found out that she had a dilation issue in her bowels and her kidneys. We were monitored very closely in the following weeks with multiple testing and specialists visits. At every ultrasound leading up to delivery the amniotic fluid level kept increasing. The doctors believed that her possible bowel obstruction had ruptured creating scar tissue. Weeks before delivery we were informed that we needed to be induced at 38 weeks, and a surgery needed to be done to correct the bowel issue. On June 9th at 9:43 am our beautiful baby girl entered the world. When she came out she was perfect and healthy, delivery went great. Mom was able to hold her before she was moved to the NICU. Once in the NICU she was having breathing issues, and was given oxygen while being monitored closely. On June 12th she received surgery to assess her bowel issues. At that time they had found her to have no appendix, her colon and intestines pushed to the left with her rectum detached, and pulmonary hypertension that was causing her to go into respiratory failure. After five hours of surgery the surgeon was still optimistic that all issues were fixable with time, but she was unique as they have never seen all these issues at once in an infant. On June 13th she was laboring to breathe, and had to be placed on a ventilator to allow more oxygen into her body. At 3:30 am we received a call to return to the hospital quickly as she was being moved to the PICU and we needed to provide  consent for her to be placed on a very high risk machine called an ECMO . This machine does the work of the heart and lungs to allow her body to receive a break but comes with great risks as far as damaging other organs , bleeding on the brain and blood clots.  Later that day we received some life changing information about her condition. The doctor informed us that her genetic tests had came back and she had a very rare condition called Alveolar Capillary Dysplasia or known as ACD , with only 32 out of 200 cases of this exact strain . We had discussed with the physician what our next steps needed to be . He informed us that no infant has survived this disease and her only hope would be to have a lung transplant with a life expectancy of 5 years or less . We were given only 2 options of possible hospitals that would be able to perform the transplant if accepted. The downside of that was she would need to come off the ECMO machine which was keeping her alive to be a considered as a candidate for the transplant and that was not a possibility for her . The next 48 hours would change our lives forever. For the whole week we were living in the hospital by her bedside with our immediate family by our side . We were still hopeful for a miracle for our sweet baby . Sunday June 16th we were informed that she had been doing good the night before and her lung x-ray showed that her lungs were clearing up of fluid and they wanted to attempt to see if she was able to come off the ECMO . As they attempted she was unable to last 2 minutes without the machine. The doctors sat us down and told us that transplant was not an option and we were faced with the decision to take her off life support. We had all of our immediate family rush to the hospital to inform them of the news and by the time everyone arrived she had made the decision on her own as her organs were failing beginning with her liver. Nurses rushed to get mom and dad and the doctor looked us in the eye and told us it was time. They then placed her in our arms as she was taking her final breaths . Surrounded by family we said our final goodbyes and our babygirl passed away peacefully in our arms on Fathers day . We donated her lung tissue in hopes that they will find a cure for this rare and fatal condition . Our lives will forever be impacted with her strength and willingness to fight . You truly don't know how strong you are until being strong is your only option . So instead of bringing our precious baby home we are now planning her funeral. We were not prepared for the expenses we are now facing and any donation would be greatly appreciated . Thank you for taking the time to read her story . We hope her memory can live on and one day a cure will be discovered so another family doesn't need to go through the heartbreak we are experiencing.
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Amber Hayes 
West Salem, OH
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