Diana- thank you!

We are home finally after a grueling train trip back
to Buffalo.

Just a quick and almost meaningless correction.

Children's did not keep Anluan longer than to
stabilize him. A whole ER unit was filling up that
day with kids passing out due to the heat. I did not
necessarily want him to stay at Children's Hospital
anyways. It is the way it is when a child has been
once diagnosed with a fatal disease that there is
little accountability with regard to their care. It's
a constant battle after that to get people to regard
his life with the same value I place on it. And I
have been fighting so hard to find a cure for him.

We did an Angel flight out of here and went to NYC as
soon as a flight could be arranged. He is stable, but
doing very poorly now and the sad part is that as well
as he was doing, no one really understands why he was
doing so well. So, getting him back to the way he was
is just heartbreaking.

I talked with his doctor in NYC. He said that he can
give him medications that may or may not aleviate
symptoms of his condition, but nothing he can
prescribe is a cure. There isn't a cure. The only
potential cure might be stem cell transplant. He
can't push me in that direction. It is not covered by
insurance. It is still experimental, expensive and
there is some risk as there is with every medical
treatment. But my feeling is that doing nothing isn't
an option; looking at Anluan now, we have to go for an
experimental treatment.

I am looking to put together a benefit to get him
somewhere where he can receive his sister's stem cells
as her cells currently in cryogenic storage are
virtually a perfect match for him and could repair
damaged brain cells for which there is not currently
treatment.

Ideas on setting up a benefit are welcome.

Thanks so much,

Dana