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Devon’s Story

On Monday, May 9th, 2011, Devon LaPrade, age 14, the son of Michelle DeLorenzo & David Laprade was given the devastating news that he has a rare and inoperable brain tumor. Devon was diagnosed with DIPG, Diffuse Intrinsic Pontine Glioma. This is a form of cancer which affects the pons (middle) portion of the brainstem, rendering nervous system function. Affecting primarily children, it is the rarest of pediatric brain tumors, with 150 to 200 children diagnosed annually. This type of tumor unfortunately has a poor prognosis, and there has been limited research performed. We are awaiting Devon's acceptance into a clinical trial treatment program, combined with standard radiation to improve symptoms.

       Devon attends Draper Middle School, in Rotterdam NY, where he is in 8th grade. He enjoys all sports basketball, wrestling, and baseball. He has recently played soccer for the school's modified team, #15. He is the brother of David, Gabby, Alexa, and Michael.

      Fundraising groups have been tentatively set and working underway! Michelle will be updating the site regularly with information regarding Devon's treatments.

A fund to help for medical and related expenses has been set up for the family at:

 

Sunmark Federal Credit Union

C/O Believe in #15 fund for Devon LaPrade

251 Saratoga Road

Glenville, NY 12302

 

Donations can be accepted at any Sunmark location.


Latest Journal Update

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Hello everyone, I know that it has been awhile.  Alot has happened since the last time I had a chance to post.  In August Devon started to decline in his progress.  He no longer can do anything himself.  He communicates with his eyes, we use a letter chart to figure out what he wants.  He looks up when we get to the right letter, it is a long process In the end of August we decided that the trial that Devon was participating in was no longer working.  I was already looking into other options.  I was going to enroll him in a trial in Texas to reirradiate him, and they offered to do the same protocol at Sloan Kettering.  We ended up going to Sloan Kettering instead.  They also combined the reirradiation with Avastin.  We just completed the reirradiation about 2 1/2 weeks ago.  We are going to continue the Avastin once every three weeks until something better comes along.  Although Devon may not be able to do much he is still very determined to get better.  He is willing to try anything at this point.  His tutor for school started with him right after radiation was complete.  He has a physical therapist coming to the house for now.  I have been researching in the hopes of finding something new.  Devon goes for his follow-up MRI on November 9th.  It will be 18 months since he was diagnosed on that day as well.  Thank to all for the love and support.  BELIEVE!!