Ashleigh and HSP

My daughter, Ashleigh, has HSP. She is now 16. She was diagnosed at the age of 8. It took us 6 long years to find the correct diagnosis. Ashleigh also has Autism and depression. She is in a service here called Wrap around. It is where different types of therapists comes in our home and has therapy services. Ash has been in it since 2009. She gets better and she is discharged, but she is back within a year.

Ashleigh's MT (Mobile Therapist) got moved to be here BSC (Behavioral Specialist Consultant), who is the one in charge. I was happy about this change. I got a call yesterday from the new MT, who I have never met or talked to before. She kept going on and on about this supplement that is a cure for Ashleigh's HSP. I told her that there is no cure. I had her come out to the house today in the afternoon. I already made the decision yesterday that if she preaches to me about this cure that she would not be my daughter's therapist. Well, she did. She said that I am calling her stupid, but I never used that word at all. I told her I have done my research and I have talked to doctors about this disease, that there is no cure. I first told her that she will not speak of this with my daughter, but she continued with her speech. Then, I told her that she is not a good fit for us. And she went to her car.

I called the office and spoke with the contact person. I told her that it took me a long time to accept my daughter's progressive neurological disease (I told the MT this, too). That we need someone that is not going to give me a speech about what will cure her. Once I calmed down, I called back because there was 2 other things I had to speak with her about. We talked about the MT again. I told her that I feel that this should not have happened. I did not tell Emily what I truly feel- that she is working for this company and getting kick backs from each client.

Why is it that some people think a "miracle pill" can cure diseases like HSP, EB (Epidermolysis Bullosa), etc? When the doctors tell you there is no cure, wouldn't they know about this so called pill? It took me so long to accept that Ashleigh will get worse, not better. This new MT for Ashleigh was the one who thinks she has the cure for her Spastic Paraparesis (HSP). I wonder if she researched this disease like I have or spoke with doctors who treat it like I have. I think not!! 

I will always be my daughter's advocate.  I will stand my ground with anyone, who thinks they can cure HSP.  Show me the data. The research.  She did not.  I am not going to give our daughter hope that she will walk better or not lose her ability to walk again.  I will never give up hope for a cure from the researchers.  I do read research articles.  Nothing says cure.  

Melissa