[Friends] Wonderful Service and Now a Prayer Request

[Rick & Doris]

Folks,

Today, we had a wonderful church experience.  It was cool, the music was
awesome, Jody's sermon was great, and we enjoyed meeting two new families.
Like you, I hope that they will return to worship with us.  You already know
all that, so why am I writing. The purpose of my note is to ask for your
prayers.  Read on. 

One of the families visiting us today was Tim, Terri, and Elise Rochman and
through talking to Tim, I learned of Elise's Tay-Sachs condition.  He even
gave me some cards that I passed on to many of you, but if I missed you, I
have included their story, a website, and a description of the disease.  It
is very sad and I think this family would welcome our prayers.  Who knows,
we have already seen some miracles happen in people's lives on our prayer
list and it would be wonderful to see another.

Please visit the website too.  www.caringbridge.org/visit/babyelise.

Rick

REPRINTED FROM THEIR WEBSITE: Elise was born December 1, 2004. An absolutely
perfect baby born after an easy pregnancy. We never imagined we could love
someone as much as we love Elise. The next 6 months were the happiest months
of our lives. Elise was a very happy and content baby - she loved to fly on
airplanes - there was never a flight that she didn't get a compliment on.
Around 7 months Elise still hadn't learned how to sit up, we were concerned,
however, everyone said not to worry about it - babies learn at their own
rate. Elise had a well baby check up at 9 months and the doctors were very
concerned; they gave us referrals to see specialists. That night we
researched cerebral palsy on the internet (that's what the doctor's thought
it might be). We saw a link on the CP website, which showed some
neurological diseases. We clicked the link and
<http://www.ntsad.org/pages/t-sachs.htm> Tay-Sachs disease came up. We were
scared when we read it, because we saw that Elise had all of the symptoms of
this devastating disease. We cried ourselves to sleep, but kept thinking
that our beautiful baby didn't have this disease. Afterall, we aren't Jewish
and it is such a rare disease. It wasn't long after that on Nov 3 that we
received the news that our baby did have Tay-Sachs. We were told our baby
would have 2-4 years to live. After the best year of our lives, this news is
hard to bear. We moved to Scott AFB, IL in January to be near family and a
good children's hospital. Thank you for visiting Elise's site, we
continually pray for a miracle, please do the same. Tim, Kerri and Elise

 

THE CLASSICAL FORM OF TAY-SACHS disease (TSD) is a fatal genetic disorder in
children that causes progressive destruction of the central nervous system.

The disease is named for Warren Tay (1843-1927), a British ophthalmologist
who in 1881 described a patient with a cherry-red spot on the retina of the
eye. It is also named for Bernard Sachs (1858-1944), a New York neurologist
whose work several years later provided the first description of the
cellular changes in Tay-Sachs disease. Sachs also recognized the familial
nature of the disorder, and, by observing numerous cases, he noted that most
babies with Tay-Sachs disease were of eastern European Jewish origin.

Tay-Sachs disease is caused by the absence of a vital enzyme called
hexosaminidase A (Hex-A). Without Hex-A, a fatty substance or lipid called
GM2 ganglioside accumulates abnormally in cells, especially in the nerve
cells of the brain. This ongoing accumulation causes progressive damage to
the cells. The destructive process begins in the fetus early in pregnancy,
although the disease is not clinically apparent until the child is several
months old. By the time a child with TSD is three or four years old, the
nervous system is so badly affected that life itself cannot be supported.
Even with the best of care, all children with classical TSD die early in
childhood, usually by the age of five.

A baby with Tay-Sachs disease appears normal at birth and seems to develop
normally until about six months of age. The first signs of TSD can vary and
are evident at different ages in affected children. Initially, development
slows, there is a loss of peripheral vision, and the child exhibits an
abnormal startle response. By about two years of age, most children
experience recurrent seizures and diminishing mental function. The infant
gradually regresses, losing skills one by one, and is eventually unable to
crawl, turn over, sit, or reach out. Other symptoms include increasing loss
of coordination, progressive inability to swallow and breathing
difficulties. Eventually, the child becomes blind, mentally retarded,
paralyzed, and non-responsive to his or her environment.

 

 

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