For those who don’t know, iSACRA ↗ is an organization for individuals and families born with Caudal Regression Syndrome/Sacral Agenesis. You probably already know that Namine was diagnosed with CRS; that’s why she uses a wheelchair and walker. (It’s actually just a part of her larger diagnosis of Femoral Facial Syndrome, but we don’t quibble about the names too much.)
People in wheelchairs are often described as being “confined” to a wheelchair. I used to say that too, until I realized how ableist of a phrase that really is. Namine’s wheelchair doesn’t confine her; it frees her. It allows her to get out into the world and experience all the wonderful things there are to see, to feel, to share.
They say no man is an island, and that’s true of growing girls. Whole families, for that matter. We could never have provided everything for Namine by ourselves, and it goes without saying — but I’m going to say it anyway — that we have received so much, so much, help from Children’s Hospital of Wisconsin’s doctors, nurses, therapists, and other staff in educating ourselves to Namine’s betterment. Not only that, but her physical, occupational, and speech therapists have helped to make Namine stronger so that she can do more on her own.
Outside of Namine’s medical care, the amazing organizations we belong to — iSACRA, YMCA Miracle League, Variety Club of Milwaukee, and WASA — have helped us with the support, encouragement, and opportunity to participate in so many activities. She plays basketball, baseball, tennis, soccer, and she’s even gotten to try sled hockey a couple times. She has danced in both her walker and wheelchair, ridden a hand-crank bike, and even had a custom wheelchair built just for playing sports!