Parker is described as a sweet boy with chubby cheeks, full lips, and a snuggly little body. “He radiated goodness and love all the time,” says his mom, Alissa.
When Alissa and Anthony found out they were expecting, they were excited to grow their family, which already included their 2-year-old daughter, Hadley. Ultrasounds during the pregnancy showed signs of arthrogryposis, a condition characterized by multiple joint contractures. They knew this meant Parker would face challenges, but were not prepared for what was to come.
Parker came into the world on January 12, 2018 not breathing and needed to be resuscitated, a frightening moment for Alissa and Anthony. He was admitted to the NICU, his fragile body supported by a breathing tube in his trachea. At three months old, doctors diagnosed him with a rare condition caused by a CACNA1E gene mutation. He stayed in the NICU for his first five months of life.
In May, his parents were able to bring their little boy home. Parker needed around the clock care, but the family started to settle into somewhat of a routine. Parker was able to take breaks from the breathing tube, was starting to look around the room, and even started rolling. But life for the Grafs was far from routine. Parker’s health was still very fragile, and he was in and out of the hospital for more than a dozen stays.
In August, when Parker was seven months old, he started having seizures. It was at that point, Alissa says, when things took a turn for the worse. “He wasn’t able to be off his ventilator at all any more, and was on a number of medications for pain and seizure control.” The Grafs enrolled Parker in hospice, and a hospital social worker told them about Crescent Cove. At that point they hadn’t thought much about end-of-life care, but learning about Crescent Cove gave them a sense of what they needed.
Parker and his family arrived at Crescent Cove in December 2018. At only 11 months old, Parker was dying. Knowing he would not reach his first birthday, the staff and volunteers orchestrated a superhero-themed party. Family and friends gathered to celebrate the life of their sweet little boy. After the party, the family spent their last night together at Crescent Cove, and the next day removed his breathing tube. Shortly after, Parker died peacefully in the arms of his loving parents.
Parker was the first child to die at Crescent Cove, news that was surprising to the Grafs who praised the staff and volunteers for their role in his final days. “I would never have guessed he was the first,” says Alissa. “They knew exactly what to do for him at all times, and they knew exactly what we needed. They cared for him in a way nobody else did.”