Many of you may or may not know of our our daughter, Mattea. She was
diagnosed with ATRT in July 2006. We obtained one of the last openings
in THE PROTOCOL that many people are now basing their own treatment off
of. Mattea will be 2.5 in November and is doing wonderfully. She is 27
months from diagnosis and 1 year off of treatment. Her most recent
scan, on August 25th, was stable. As far as she is concerned, things
couldn't be much better.

When we realized we were pregnant with our second child, we underwent
extensive genetic testing in hopes of ruling out suspicion that our
experience with ATRT was the result of a genetic issue. Unfortunately,
we were told that Mattea, and my husband Mike both have the INI-1 gene
mutation (and in their case, a total deletion). Further testing
revealed that our second child, Mackenzie, does not have this mutation.

One of the primary issues that Dr. Biegel (Children's Hospital of
Philly) is trying to address is, why do some people with INI-1 suffer
from these vicious cancers while others with the same mutation develop
benign schwannomas and neurofibromas. So far, it's a mystery.

Anyway, we are now a multi-generation family with the presence of this
gene mutation and the following: ATRT, possible medulloblastoma
(diagnosed in the early 1960s), Schwannoma, and Neurofibromas.

Has anyone else had an experience similar to this? I know it's a long
shot, but I'm trying to gather any information I can that could be
anywhere close to what we're experiencing right now.

Thanks,
Tara Lesorgen