Time is running out...

It is with great sadness that I report today the loss of yet another SIOD- Schimk Immuno-osseous Dysplasia child.  Piper Smith was a beautiful young girl, who like Emily was put through more than any child should have to bear.  I spoke with Piper's mother, Pam several times via telephone and countless times on Facebook.  Piper and Emily were very close in age and this haunts me to my very soul- once again- as all I can wonder despite all my being to BELIEVE- is when will it be Emily's turn?  We have surpassed ALL odds with her and time will run out.  Please- in honor of Piper and the other children lost to SIOD- spread the word about LGF and SIOD and donate what you can to help us raise the desperately needed $3.5 million for research to obtain a medicine to help these children.  I become more and more afraid that Emily will not be here to see that goal obtained.  She has to be.  In my next breath- I BELIEVE- I have to!