About once a month, 11-year-old Gideon Dobson goes to sleep-away \u201ccamp,” a special place that is only 40 minutes from home in Peoria, Ariz.\n<\/p>\n
The “camp” is actually a non-profit in Phoenix called Ryan House<\/a>, which provides caregiving at no cost to Gideon’s family and others navigating life-limiting or end-of-life journeys.\n<\/p>\n It’s something his mom, Kathleen Muldoon, and dad, Seth Dobson, rely on for their mental health. Gideon has 42 diagnoses, including deafness, blindness, epilepsy<\/a>, and cerebral palsy<\/a>. He requires 24-hour, round-the-clock nursing care.\n<\/p>\n \u201cGideon is an amazing person, but literally a million-dollar kid,\u201d says Kathleen, referring to the high cost of caring for his medical needs. And although nurses provide invaluable help, much of his care is handled by his family. \u201cWhen you have something so stressful in your life all the time without having respite, it can be devastating.\u201d<\/p>\n Gideon Dobson.<\/p>\n Courtesy of Kathleen Muldoon<\/p>\n Respite facilities like Ryan House offer short-term caregiving for children with medical complexities. They give caregivers a much-needed break \u2014 as well as peace of mind that their children are safe, happy and being looked after by trained professionals.\n<\/p>\n While Gideon is at Ryan House, Kathleen, 48, and Seth, 48, can take Gideon\u2019s siblings, Genevieve, 14, and Cormac, 9, to do things that Gideon can\u2019t do, like go camping or hiking.\n<\/p>\n Kathleen doesn’t want them to feel like they are less of a priority, even though Gideon’s needs “are so intense.” She says they need \u2014 and deserve \u2014 their parents’ full attention. Ryan House makes it possible.\n<\/p>\n The Dobson Family.<\/p>\n Courtesy of Kathleen Muldoon<\/p>\n Kathleen is sharing her family\u2019s story with PEOPLE as part of\u00a0Children\u2019s Respite Homes of America<\/a>, a national movement working to expand pediatric respite and hospice care across the United States.<\/p>\n \u201cParents just need a break,\u201d says Jonathan Cottor, CEO and founder of the\u00a0National Center for Pediatric Palliative Care Homes<\/a>, which is another name for Children\u2019s Respite Homes of America. He and his wife, who live in Scottsdale, Ariz., opened Ryan House in 2010. It’s named after their 17-year-old son, Ryan, who died in December 2018 after battling the neuromuscular condition spinal muscular atrophy.<\/a>\n<\/p>\n He explains the thinking behind the facility:\u00a0\u201cThe number one thing that a family who has a child with a very significant complex medical condition wants more than anything in the world is a cure for their child,” Cottor says.\n<\/p>\n “The second-biggest wish that families have: ‘Just give me a good night’s sleep. Just give me a break every once in a while so that I can rest and recharge. Then I can get back to this very difficult journey, tackle the next challenge, and the one after that.’ These homes give families a respite from the exhaustive nature of caregiving a child with severe medical needs. They can reconnect as a couple and as a family.\u201d\n<\/p>\n There are currently fewer than 10 homes like Ryan House across the country. Cottor’s goal is 50 in the next five years.\n<\/p>\n Gideon Dobson when he was born on November 12, 2013.<\/p>\n Courtesy of Kathleen Muldoon<\/p>\n Looking back, Kathleen never thought her family would be affected by severe disability. As a professor of anatomy at the Geisel School of Medicine at Dartmouth (Seth was a professor of anthropology at Dartmouth College), she was well-versed in embryo health. “My specialty in teaching was embryology, or the formation of people before they\u2019re born,” she says. \u201cI knew too much, but not enough \u2014 I didn\u2019t know the lived experience of disability, I knew the textbook experience.\u201d\n<\/p>\n And although she had a textbook pregnancy and delivery with Gideon, 18 hours after he was born, he had a rash, his belly was enlarged and he was jaundiced, all signs of a viral infection congenital cytomegalovirus<\/a> (cCMV.) It’s a condition caused by a virus that can be passed from mom to baby during pregnancy, according to Mayo Clinic<\/a>. Once transmitted, it stays in the body for life.\n<\/p>\n Gideon’s diagnosis, his mother knew, was not curable \u2014 and it would likely lead to many more health problems.\n<\/p>\n \u201cYou can\u2019t fix a brain,\u201d she explains.<\/p>\n Gideon as a toddler.<\/p>\n Courtesy of Kathleen Muldoon<\/p>\n Never miss a story \u2014 sign up for\u00a0PEOPLE’s free daily newsletter<\/a>\u00a0to stay up-to-date on the best of what PEOPLE has to offer, from celebrity news to compelling human interest stories.\n<\/p>\n At the time of his diagnosis, they were living in Vermont. \u201cI think the first question I asked Seth was, \u2018How are we going to afford this kid? What are we going to do?’ ” Kathleen recalls, while acknowledging her privilege of being a medical school professor with good health insurance.\n<\/p>\n Gideon was initially approved for one hour a week of home health care occupational therapy, which his parents knew would not be enough. He needed trained nurses 24 hours a day, and that was cost-prohibitive. Kathleen and Seth couldn’t ever take a night off; his conditions were too complex for a babysitter. And while the state would cover one evening of care, Kathleen says, they had to wait another 2 years to use the benefit again.\n<\/p>\n Through research, the couple found a cerebral palsy inclusion report<\/a> that ranked each state’s approaches to promoting independence and productivity, ensuring quality and safety, and keeping families together.\n<\/p>\n The No.1 state on the list in 2013? Arizona.\n<\/p>\n Gideon Dobson.<\/p>\n Courtesy of Kathleen Muldoon<\/p>\n So, even though Kathleen and her husband loved their jobs at Dartmouth and living in Vermont, she applied for a teaching job at the medical school at\u00a0Midwestern University<\/a> in Glendale, Ariz. The family moved to Peoria, outside of Phoenix, in June 2014. Seth changed industries to work as a data analyst at Hills Science Diet.\n<\/p>\n