ur daughter, Ivy, started receiving services from Boyer when she was only a month old. She has a rare life-limiting mitochondrial disease that causes significant global delays and a slew of other complications. At the time of her diagnosis, we were informed that Ivy likely wouldn’t make it to her first birthday. We are happy to say that we recently celebrated Ivy’s second birthday!
Ivy’s team at Boyer has been invaluable in helping our family process her diagnosis and learn to support her as an individual, beyond her disease. In spite of her grim diagnosis, Ivy’s care and therapies have always been approached with the assumption that she will learn, grow, and eventually graduate from Boyer and move on to public school – all things that seemed unlikely back when we started, yet today, seem inevitable. Their encouragement and ability to simultaneously focus on the present with an eye towards the future, no matter how uncertain that future seems, has set Ivy up to be beyond successful. She is truly thriving.
Gay encouraged us to get fitted for an adaptive stroller, and even when we were sure she would have no use for it, made sure it included a transit package so Ivy could someday ride the school bus. Through our sessions with Mary-Ellen and Caroline we have learned that Ivy’s favorite color is yellow, and have been given countless ideas and suggestions for play that supports her senses beyond her vision impairment. Nancy helped us notice that Ivy is left-handed, find the toys that work best for her, and has continued to help build Ivy’s strength and skills working towards independent movement and play. The whole Boyer team gave us the tools to help Ivy succeed for a lifetime, no matter how long that lifetime is.
Ivy’s family loves the outdoors, and she enjoys exploring the world around her.
In addition to helping Ivy master skills like looking, touching, and vocalizing, the team at Boyer has given us the confidence as parents to care for her needs and continue to live the life we love. We have always been passionate about outdoor exploration and have long looked forward to outdoor adventures as a family. We are slowly learning to adapt our outings so Ivy can experience and share in the joy and fun of being outside. Ivy took her first backpacking trip to Mount Rainier when she was 10 months old. As she gets bigger, we’ve realized we won’t be able to carry her into the backcountry much longer. This year we got a canoe to make our trips more accessible for Ivy – she loves it! Ivy gets so calm and happy laying in the bottom of the boat and rocking with the waves or sitting propped up at the center thwart and watching the light change behind trees and clouds overhead. The bumpier the water, the more fun for Ivy. It is so incredible to see our adventurous spirit duplicated in her toothy grin.
Thanks in large part to Boyer’s encouragement and support, Ivy is getting the kind of childhood we would never have thought possible for someone with her condition. We miss the in-person care and interactions at Boyer, and we are so grateful to be continuing Ivy’s services virtually.
Ivy’s parents have found ways to adapt so they can enjoy outdoor adventures as a family, including hiking, camping and canoeing.