Jim and Karrie Pierson have been blessed with four wonderful children, Katherine, Joe, Caroline and Anna. Caroline and Anna were born with a rare, undiagnosed genetic disorder causing their brains to stop growing around 20 weeks gestation. “Our sweet Anna passed away at just 5-years-old and Caroline cannot walk, talk or eat orally and struggles with seizures, muscle spasms and visual impairment, but her smile is contagious!” Jim said.
“Jim and I joined the Ryan House Board so we can help others understand the importance of taking time to nurture yourself and care for every precious relationship in your life,” Karrie said. “The Ryan House Care Team is the most knowledgeable in the country for pediatric palliative care and we are proud to be part of this amazing organization.”
An infectious laugh and love of music is what you’ll encounter when you meet 5-year-old Donovan. You’d never know he was born at one pound, 11 ounces along with his identical twin, Darrius, who passed away at just 6-days-old. Diagnosed with Cerebral Palsy, Cortical Visual Impairment, severe mental retardation and prone to seizures, Donovan never learned to walk or crawl, and will never develop fine motor skills.
“The qualified staff at Ryan House not only provides respite and peace of mind, but they know me! I call three to four times a day and that is ok!” mom, Toya, said. Donovan loves the sensory room and hydrotherapy pool–things he doesn’t get at home and his journal is FULL of loving notes from the staff. “Sometimes parents, especially a single parent, needs a break and may not even realize it until they have one,” she said. “I don’t know what I would do without Ryan House. I don’t know how I did it without it.”
Ryan House Shining Star: Ryan
Jonathan and Holly Cottor learned their youngest son, Ryan, was not just a “late bloomer,” but was born with Spinal Muscular Atrophy. There is no treatment or cure for SMA and they were told that 80% of children diagnosed before their first birthday would likely not survive to their second birthday. “We were told to take Ryan home and enjoy the time we had with him,” said Jonathan. “We felt devastated, shocked, and anxious about what the days or months ahead would bring.”
“We felt as though we’d hit a wall both physically and emotionally,” Holly said. “Ryan House is not only a dream come true for our family, but for the over 4,000 children diagnosed with life-threatening conditions in Maricopa County, Arizona. Ryan is not only the Ryan of Ryan House, but a frequent visitor who looks forward to his next stay so he can play games with friends, and be spoiled by every member of the Ryan House team!”
The financial support provided from the Global Giving project “Provide Respite and End-of-Life Care to Children” has been invaluable in supporting the mission of Ryan House. Palliative, respite and end-of-life care are provided to children with life-threatening conditions at Ryan House at no cost to the family so that every child has access without regard to insurance status or ability to pay.
In its first year in operation, Ryan House has served children from around the state of Arizona. Ryan House provided over 34,500 respite care hours as well as end-of-life services to 22 families, and is projected to serve 250 families in the next year.
The funds provided have been spent providing children with life-threatening conditions life-enhancing therapies. The hydro, sensory, music and art therapies are offered on-site and allow all children who come to Ryan House to learn, grow and explore during their stay by providing opportunities that they otherwise would not have access to. These therapies are essential to giving children meaningful respite stays at Ryan House and are implemented in a manner that complements the regular care routines provided in their homes.
Thank you for your support of Ryan House and our mission to provide respite, palliative and end-of-life care to children with life-threatening conditions throughout the state of Arizona.
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