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!
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