Diane--

Through the pain and struggle of your words, your love for your son has
touched me.

Thank for your story.

God bless your son, you, and your family.
--K


On Thursday, January 22, 2004, at 10:50  PM, Dianne Kemp wrote:

> I have been asked to write to the list about my experience with Moebius
> Syndrome.
> My son, Matthew, was born with this syndrome (also known as Cranial
> Limb
> Disruptive Spectrum) in 1982.  His "defects" included sofe cleft palate
> defect, club feet, depressed breast bone, high palate, hypotonia
> (especially
> in his neck), no lateral eye movement, facial paralysis, one paralyzed
> vocal
> cord and weakness on the right side of his tongue.  He can move his
> lower
> jar up and down - so he chewed on the nipple but could not suck.
> He has had about 45 surgeries - eyes, feet, palate, a tracheostomy for
> a
> while.  He is now 21, autistic, mentally impaired, non-verbal, lives
> in a
> group home.
> He was fed by gavage for the first few months of his life.  Once
> aspirated
> and developed pneumonia - which almost took his life.  At about four
> months,
> when he finally came home, I fed him with a nipple with a large hole
> in the
> nipple (pour a little in, wait for a swallow, etc.).
> It is an awful syndrome - robbing the mother of any feedback - no
> smile -
> very difficult to bond.  Add the trach and you lose vccalization. Very
> painful.
> The syndrome has many variants - some are worse than other.  It is a
> syndrome that is not seem often and is often not diagnosed.  There are
> no
> tests to confirm the diagnosis, and it is not a chromosomalo defect.
> I will be happy to answer any questions.
> Dianne Kemp BA, RN, IBCLC
> Marysville, Michigan
> Feeling sad remembering the son I dreamed of - now he does not
> recognize who
> I am.
>
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