Marilena Rosa was born on
the 24th of November in 1995.
Her father and myself always wanted a little girl.
We already had 3 boys and had been praying for a little girl for a very long time.
When Marilena was born, our dreams came true.
Yet something was wrong with our dream girl, Mari.
Marilena was born with Nezelof's Syndrome.
Nezelof's Syndrome is an extremely rare immune
deficiency disorder characterized
by the impairment
of cellular immunity against infections,
especially by those agents
that do not normally cause serious
illness (opportunistic infections).
In cell-mediated immune responses,
specialized white blood cells known as T lymphocytes
or "killer cells" help B lymphocytes respond
to infectious foreign agents that invade the body.
Nezelof's Syndrome may also include
some abnormalities in humoral immunity.
In this form of immune response,
antibodies that are produced by specialized cells
(i.e., B lymphocytes) circulate in
the lymphatic fluid and blood.
Antibodies fight off bacteria, viruses, and
other foreign substances that threaten the body.
B lymphocytes enable the body to produce
and maintain circulating antibodies.
In a subgroup of people with Nezelof's Syndrome,
immune deficiency may be caused by a
lack of the enzyme purine nucleoside phosphorylase (PNP).
Having Nezelof's Syndrome,
our little girl had to stay far way from illness.
Just a tiny cold could kill her.
She had monthly, painful
shots of gamma globulin.
She took many antibiotics
to keep her little body free of infections.
Her brothers loved her to death,
and she was given the nick name
"Chica Bonita",
meaning pretty girl.
She was always the heart of the family.
Mari was greatly loved by everyone in her family.
In Jan. 1999 Mari feel ill.
She came down with a case of the chicken pox,
how she got it we will never know.
The doctors took her in.
She spent 5 nights in the hospital when
the chicken pox swelled up
around her little neck.
Mari died on Jan. 21st, 1999
when she stoped breathing due to
the swelling of chicken pox in her neck.
She was 3 years old when she died.
Marilena Rosa was burried on Jan. 25th, 1999.
She looked like a princess dressed in her red velvet Christmas dress,
with a red ribbion in her hair.
Mari is greatly missed
by everyone who ever knew her.
Myself, her madre, and
her father , Pepe, have set up
a fund for childern with Nezelofs
..praying something can be done for the childern.
Read
my Dreambook!
Sign
my Dreambook!
Please Sign The Family Guest Book while your here..Thanks...
