Support Ava Celeste's Memorial and Family

Our beautiful miracle, Ava Celeste, was born on April 29th, 2024, at Sunrise Children's Hospital. When we were not rewarded with the sound of her cries, we knew something was wrong. She was whisked away to NICU and diagnosed with a heart condition. She could not breathe on her own. As the days passed in NICU, we noticed little anomalies about Ava’s physical appearance that would turn out to be indicative of Beckwith Weidemann Syndrome. It is very rare and affects 1 out of 11,000 babies but has a high survivability rate. Our focus was on the heart condition and our hope was that Ava would survive the open-heart surgery required to fix it. Ava made it but our relief was short lived as the doctors informed us that Ava's kidneys did not form correctly and her lungs could not function without the ventilator. Genetic testing was ordered, and it was revealed that Ava was missing Chromosome 10. That meant that between 3.5 and 17 million DNA building blocks never made it to Ava. With each surgery there was the hope that this would be the fix for our beloved Ava. We were not able to hold her much because she was attached to so many machines keeping her alive. To be free of the machines and increase her chances of surviving, she had a tracheostomy with a feeding tube. She survived and we were one step closer to going home. Unfortunately, not long after the trach, Ava began having seizures and her last surgery on 8/23 was to put a shunt in her brain to relieve pressure.

We celebrated 4 months with her on the 29th of August. We truly thought we were bringing her home soon to enjoy her and snuggle. The next day, she suddenly developed sepsis. Doctors gave her the maximum doses of antibiotics trying to stop its rapid progression but at 5:40 am on August 31st our baby girl took her last breath. We never got to hold her without tubes and contraptions, we never got to hear her cry, we will never know what she could do. We knew it would be difficult to raise a child with so many special needs, but we were ready. We believed that Love could conquer all.

However, with all that we lost, we also gained much from caring for Ava and in working with the doctors and nurses at Sunrise. The nurses in the CICU were the bridge between us and Ava, helping us to navigate her special needs to bond with our newborn. We learned that unconditional love gives us the strength to take on challenges we never thought we could; to be rebelliously optimistic and hopeful. To look for meaning in the suffering and find it in coming together to keep Ava’s spirit alive. When we hear ‘You Are My Sunshine’, we will think how she would calm down upon hearing it; when we see pink or purple we will think of her brightly colored headbands, blankies, and frilly socks. The nurses in CICU decorated Ava’s little area with butterflies which we will forever associate with our little girl. She left her body that no longer served her and took on the wings of the butterfly to gain her freedom from suffering. While we had hoped to take her to our home, her Creator took her to His. She made it Home.

The fact that she is gone is so difficult to process because that is the present and we have been so focused on the future. So few got to know Ava during her short time on this earth and this Go Fund Me serves to let more people know about our little warrior princess. We want others to know how hard she fought to stay here for the 4 months we had, fighting against insurmountable odds for as long as she could.

During our time with Ava, we were not able to work and so have incurred some debt as a result. We also have the expense of burying Ava and the memorial service to give our families a chance to “meet” her. If you feel moved by Ava’s story and would like to give something, we would be grateful.