United Brachial Plexus Network, Inc.

Hi, I wrote this earlier and somehow it wasn't posted. My mom is a resident in a local nursing home and I visit her almost daily. This year, I decided to buy some of the silver ribbon pins for awareness and share them with the RN's, PT's and OT's. While doing this I discovered one of the Aides has a BPI,and one of the RN's has a BPI as a result of a mastectomy. One of the PT's has a daughter that is studying to be an OB/GYN. She wanted literature for her daughter to study. I downloaded and printed info to take to her from the UBPN. But, the best part, I found an RN, Dorothy, whose 10 year old daughter has an OBPI. I asked Dorothy about the treatment that her daughter has received and she told me that the doctors said nothing could be done until she was 18 years old. Wow!! Can you believe that? I can that's what I was told, too. I took Dorothy a copy of Outreach and gave her Dr. Raul Nath's name, address and phone number. She called , left a message and he called her at work. All she has to do, is get some medical records and a video of the girls function and limitations, and then an appointment can be set up. Dorothy was thrilled to say the least and thanked me, whole heartily. But, I thank the UPBN for making all this information avaiable. Thanks for all that you do and for all that contribute their time and experience so other's can bring awareness to those that do not know. Rhoda

Rhoda, Hi! You sure made a big impact on so many people! I wanted to comment that my daughter is also 10 years old. There was no info available 10 years ago. We were told to see neurologists, and orthopedists and therapists....one told us that possibly when Brittney was 14 or in her teenage years she might be able to have a tendon transfer - I remember leaving that appt happier than ever because there was finally hope for her to gain more movement. Brittney was eight when we found this message board - and now that there is so much available it can be very overwhelming and scary - especially all of the surgery options. How is her daughter doing today? If she would like - please post here and I can email her and introduce myself and Brittney.
Christy

Hi, This all happened this week. Hopefully they will get to see the doctor soon. When I see Dorothy I will certainly tell her to post on the UBPN. She really needs to hear from everyone. Thanks for answering. Rhoda

Rhoda

Thanks so much for sharing this... It is the first great story about Awareness Material...

I am sure you feel great today. It is amazing how a simple act of kindness can have such a great outcome...

Nice to see you on the board... instead of just e-mail....

Kath