I was forwarded a news story
about a little girl with
the same diagnosis with Josh.
I very much want to get in touch
with this family so I can visit
with them and share our
children's experiences.

The story begins.....

It's not every day that an 8-year-old travels
to Capitol Hill to advocate for Medicaid funding.

But Drew Szandrocha is on a mission. He has already
saved his sister's life once, and now he wants to do it again.

In December, Drew woke up in the middle of the night
because Jenna, 4, who slept in the same room with him,
was in a seizure and having difficulty breathing.
He immediately ran to get his parents. Jenna was rushed
to Connecticut Children's Medical Center in Hartford,
where she spent four months in the intensive care unit
and was diagnosed with a rare disease called
late-onset central hypoventilation syndrome
with hypothalamic involvement.
People with the disease cannot breathe spontaneously,
especially at night, and often need a ventilator to survive.


Here is the website for that article: http://www.courant.com/news/local/nb/hc-soumedicaid0614.artjun14,0,1105186.story


And on a sadder note - I also found a case study tonight
on another child who had the same diagnosis. As I read,
I would have thought it was Josh they were talking about
if not for the years.

It includes:

The patient had been a healthy child whose
medical problems surfaced in 1999
(just prior to his ninth birthday)
when his mother noticed a weight gain.
Throughout the year, the boy had experienced
excessive weight gain, night time snoring,
and increased daytime somnolence.

Josh's medical problems also surfaced
just before his ninth birthday.
But the child in this article died.

You can read the article at this website:

http://www.msufame.msu.edu/
researchforum/admin/submission/
printAbstract.php?ID=365

My heart breaks when reading about that -
but I pray Josh's outcome is better -
much better!

Please God, help Josh!!!!!