About two years ago a mom from a Shanghai facebook group asked me a question.” Who is this girl who is my son’s friend? Now I get requests like this often. Sometimes I get an answer, sometimes I too am left to wonder. So, when someone asked me to find out who was in the picture, I was surprised at the answer we got. A beautiful girl with Kristal bones. Well, that is not a US diagnosis. A further investigation revealed that this was a girl with Osteogenesis imperfect, aka brittle bone disease.
This expanded into a two year search that culminated in finding out there were two children in with this issue, there was a younger and older child. Both girls. Now as a Pediatric Physical Therapist, I have worked in a major center and know what this means. This child can fracture a bone by picking up a pencil. They can be doing a perfectly normal thing or take a fall and fracture a bone. Here is what I know as a PT, these kids do great! They generally are of normal intelligence and are just totally amazing!
One of our families took some pictures of the younger girl and before you know( not really, it took a long time) we had a file and now we are advocating for this beauty.
Well, since she is such a beautiful girl, I could not wait to meet the older girl with OI. When we got to her orphanage, she was in the hospital and we could not see her. L I was sad and vowed to try to help her on our next visit. Our MD, Dr. Darla went back in this orphanage over Christmas and she was able to see this beauty. And she got the information needed to advocate for her. Well here we are and advocacy begins.
Enter the village. A wonderful advocate I know, Sharon from CHI, messaged me. Her friend had a slightly used wheelchair to donate and wow, how could we get it there? I have carried wheelchairs to China before. Through several cities and in to and out of multiple airports. On planes and in vans, in cars and it can be daunting. Well, here more ot the village steps in. A family offers to take the chair. Turns out they are a Gladney family and really are not taking it for that reason. They are just great people. Sharon picks up the wheelchair from her friend. Her husband delivers it to the family miles and miles away from where they live. Now the adopting family has the Wheelchair. They leave in days! Our hopes and prayers go with them.
We are saying to this beautiful girl, we love you! You matter! You are in in our hearts! So now that you know the story, stay tuned to see the results! This girl, our Suzanna, is getting a wheelchair but what it means is so much more. It means that this beauty is in our hearts. She matters and we will not forget her. We will find this beautiful child a family. She will not be forgotten. She will come home!!!!!
this is Suzanna in her current wheelchair
It takes a village, all of us working together, to help these kids rewrite their own story and make it a tale with a happy ending. And it is so worth it!