Jack was born with a rare form of Congenital Muscular Dystrophy and was on a ventilator from four months old to when he passed away at 15 years old. Though he was in a wheelchair and non-communicative, “He had eyes that could talk,” said his mom, Ann. “Bright eyes and a great smile.”
Though Ann usually stayed with Jack at Ryan House, it was a rare blessing for her to rest and sleep at night without interruption. The staff and volunteers read to him and played music, and the Beatles were his favorite. He liked to watch Beatles on YouTube, and Danielle, the harpist, played Beatles tunes for him as well.
“One of the volunteers would take him to the music room, turn on the player piano and dance with him in his chair,” Ann said. “He loved that.”
Ann praised the love, care and concern Ryan House provided the family, and she appreciated the support from other families and the ability to talk with other people who could listen without being overwhelmed. She said it’s a place where her child was fully accepted and didn’t stand out in the crowd.
“The whole sense of relief on so many levels,” Ann said. “Knowing he was being taken care of was peace of mind.”