Carrying Her Forward: Our Journey Raising a Child with a Rare Genetic Disorder

Becoming a mother changes your life. 

Becoming the mother of a child with disabilities and a rare genetic disorder changes the way you see the entire world. 

 

Our daughter experiences life in her own unique and beautiful way. Watching her grow brings moments of incredible joy, pride, and love that are hard to put into words. Every milestone—big or small—feels like a victory worth celebrating. 

 

But there are also parts of this journey that people don’t always see. 

 

Caring for a child with extra needs can be physically demanding. Many days I carry her, lift her, help her navigate spaces that weren’t designed with her in mind, and support her body when hers needs extra help. I don’t know how long she will need me to do these things, but I do know that I will do them for as long as I possibly can. 

 

That’s why taking care of my own body matters so much to me. Staying strong isn’t just about fitness or mental health—it’s about being able to keep showing up for her, every single day. 

 

Like many families raising children with disabilities, we also face ongoing medical appointments, therapies, specialized equipment, and other expenses that come with making sure she has the support she needs to thrive. These costs can add up quickly, but they are all part of helping our daughter experience the fullest life possible. 

 

Support through this page helps lighten that burden. It allows us to focus more of our energy on creating opportunities, experiences, and moments of joy for her. 

 

If you’ve taken the time to read our story, share our page, or support our family in any way, please know how deeply grateful we are. Your kindness means more than we can ever fully express. 

 

Thank you for being part of our journey and for believing in our daughter’s future.