The Herman family enjoyed outdoor activities and spending time exploring their community, so when their mom, Kyrie, began experiencing sudden and unexplainable health complications, their active lifestyle changed significantly. Many exhaustive and often disappointing doctor’s appointments later, Kyrie was finally diagnosed with a rare genetic connective tissue disorder called Ehlers Danlos Syndrome.
As a spectrum disorder, Ehlers Danlos Syndrome can have a myriad of symptoms that fluctuate in severity every day, which makes it a difficult and unpredictable illness to manage. As the Herman family struggled to come to terms with this new diagnosis, Kyrie decided to apply for a Big for her two children, Cadence and Holden, in the hopes that they would be matched with caring mentors who could provide them with the active lifestyle they had been missing and a listening ear as they navigated new and sometimes upsetting circumstances.
Cadence (13), was matched to Shaundra, a caring and compassionate business owner and student. During their very first meeting, the connection was instantaneous. Together, they have done escape rooms, trampoline parks, visited the corn maze, and gone for milkshakes. Cadence loves having someone to talk to and has relied on Shaundra as a support system and friend.
Early in their match, Cadence was also diagnosed with Ehlers Danlos, and as her symptoms worsened, she was often required to use a wheelchair. Kyrie was nervous that Shaundra would feel overwhelmed by the diagnosis and the complications involved, but her fears were soon put to rest. Shaundra has proven to be reliable and caring, which is something that Cadence especially appreciates as her peers are often less understanding. She tells me that having a mentor is “just someone I can go out with… it’s like a friend, but better!”
Cadence has been especially inspired by Shaundra, who is a business owner and has experience working in healthcare. Cadence wants to become a doctor someday, and Shaundra has helped her start working towards those goals. Shaundra feels similarly inspired. They were matched when Cadence received the Ehlers Danlos diagnosis, and so Shaundra has been a witness to the slow progression of the illness. Through it all, Shaundra has been moved by her Little’s resilience and positive outlook. Even as challenges come her way, Cadence holds firm to her plans for a fulfilling and hope-filled future.
Recently, Holden (9) was diagnosed with benign Hypermobility syndrome, a precursor for Ehlers Danlos Syndrome. His Big, Rebecca, has also supported him through this experience. For a school project, Holden wrote about Rebecca and shared that she was “the best thing that happened to him last summer.” Holden and Rebecca have enjoyed connecting over their shared love of movies – Rebecca has acted in the past and so Holden loves learning about her experience in the film industry. They go for walks, play catch outside, and have visited the corn-maze. They enjoy going for ice-cream and just visiting.
Both Shaundra and Rebecca have been major supports through various hospital visits and doctor’s appointments. Kyrie feels incredibly grateful for the community-based program which has given her children something to look forward to and provided outlets as they navigate their health journey. Their family has been deeply impacted by the mentorship program, and it has changed their lives for the better.