At 18 months old, Rhys was the 118th person in the world to be diagnosed with a genetic disorder consisting of a mutation on the KCNQ2 gene. As Rhys got older, it became harder to find caregivers who could work with him because he was too heavy and difficult to move around. This is when Rhys’ mum, Natalie, came across Safehaven.
Rhys is now a regular client at Safehaven and his parents use the respite program to not only support Rhys but allow them to take care of some of their other needs as well. “Safehaven starts to feel like your home away from home. It deserves more recognition and more community support. I think if they had more funding, they could have more support for more kids to live a fuller life.”
Natalie expressed that managing the care of a special needs child can be like a full time job. “Mums have to be champions for our kids. We have to be the one to navigate a system that’s brand-new to us. We have to ask questions over and over until we uncover what we need and make sure we’ve exhausted every avenue. Each child is unique and it’s up to us to give our very special kids the best chance at life. This can be overwhelming, and lonely.” Her dream is to have consistent in-home care on a regular basis for Rhys while using Safehaven for situations like vacations and weekends away.
“It wasn’t until three years ago that I accepted Rhys fully for who he was. When I accepted the change, that’s when things got better for both me and my family. I’m glad that a service like Safehaven is there. Safehaven allows you to feel normal on the weekends. To be a regular person who doesn’t have to worry about things like moving a wheelchair in and out of your car. To feel free for a change. The stress that people are feeling in quarantine right now is a lot like everyday life for a family with kids with special needs.”
“When we drop Rhys off at Safehaven it feels like an extended family to us. You get what you give and if you treat Safehaven like family, you get treated like family.”
Individuals with medically complex needs and their families can often feel invisible as they struggle to get the supports they need and deserve. Community-based respite care is a critical support that provides immense benefits to both the individual and their family.
For individuals, respite care facilities give them the opportunity to simply enjoy themselves while temporarily getting a break from treatments and therapies. It also gives them a chance to socialize, express themselves and develop important skills through different recreational and leisure activities. For families, respite provides a short break and relief from the physical, emotional and financial stress 24/7 caregiving can cause. Safehaven supports these needs by providing top-quality care to children with medically complex needs while their families take some well-deserved time to rest and recharge.
