Tuesday, March 10, 2009

Prayers From Maria Foundation

I wanted to share with you a video that was recently brought to my attention.



It was put together by the Prayers From Maria Foundation, I have asked and received permission from Maria's dad Ed to share this video with the DIPG community. I ask you to please take a few minutes and watch the video and see exactly what diffuse intrinsic pontine glioma (DIPG) does to these children and their families. It is hard for me because one of the doctors in the video, Dr. Mark Kieran of Dana-Farber was my son Matthew's doctor. I don't have to imagine how these parents are feeling, I know how they are feeling, everything they say, we experienced.

Prayers From Maria is named after Maria McNamara...from the PFM site...

"On April 1, 2006 life ceased to exist the way my family knew it. My oldest child and only daughter, Maria, was diagnosed with a diffuse intrinsic pontine glioma (DIPG). DIPG is an inoperable incurable brain tumor that strikes children usually between the ages of 5 and 11. A child with this diagnosis is given a 10 to 12 month life expectancy.

With the devastating diagnosis of our Maria came a great deal of sorrow and pain as well as desperation. My husband, Ed, and I frantically searched medical journals, books, articles and the Internet for anything—any sign of hope that we could cling to that might possibly save our daughter’s life. Instead, we were surprised to find very little research and few experimental trials. That which we did find was difficult to decipher from a layman’s perspective and, of course, each case study ended in the death of a child."



Prayers from Maria is a truly wonderful foundation, Ed told me that a new web site will be out in the next few days. Prayers From Maria is listed in the Foundation section, I will update with the new site once it is available.

Thank you Ed & Megan, from the bottom of my heart for all you do to help raise awareness and fund research for DIPG, please know I appreciate all you do for the DIPG (all childhood cancer) community. I will never forget Maria and her journey. May God comfort you each day.

God Bless.

Rich ~Angel Matthew's Dad~
DIPG Parent

1 comment:

  1. I am so sorry. We are going through this nightmare now. My five year old nephew was just diagnosed with this evil tumor. I would like to connect my sister with people who are going through the same thing. Can you tell me how to do that?
    Dawn VanVladricken
    vanvladricken@verizon.net
    484-326-8206

    ReplyDelete