Trisomy 22 and Misc. 22 Interest Board: my son was born with an extra piece on 18 and missing piece of 16 my heart goes out to you want info

[ Post a Response | Trisomy 22 and Misc. 22 Interest Board ]

my son was born with an extra piece on 18 and missing piece of 16 my heart goes out to you want info

Posted by Christine on 12/22/2005, 10:55 am, in reply to "unbalanced translocation chromosome 15"
64.12.116.196

--Previous Message--
: unbalanced translocation chromosome 15
: anyone with any information on this?
: A family with 2 young boys ages 4 and
: 2 havent been able to locate anyone
: with this rare disorder and are
: looking to correspond with someone
: whether in the medical field or maybe
: has a child of their own with this
: disorder. Their physician too, has
: never heard of anyone with this so
: your help is greatly needed.
: Here is their story:
: Jan 2, 12:20 PM EST
:
: Rare Chromosome Disorder Hits N.Y.
: Boys
:
: By CAROLYN THOMPSON
: Associated Press Writer
:
:
:
:
:
: MACHIAS, N.Y. (AP) -- Four-year-old
: Dalton Eisenhardt and his 2-year-old
: brother, Wyatt, don't protest or
: complain about the machines that hold
: onto them with tubes and cords during
: every moment of their lives. Despite
: the tracheotomies, the feeding tubes
: and ever-present nurses, the boys
: smile.
:
: It is harder for those who love them.
:
: The young brothers are fighting a rare
: and puzzling chromosome disorder, and
: doctors in Buffalo, 45 miles north,
: have been unable to find anyone
: anywhere with the same condition. They
: cannot tell the Eisenhardts what might
: come next, what toll the disorder
: ultimately will take.
:
: So far, dozens of hospital stays,
: surgeries, doctors' appointments and
: consultations have produced only more
: questions. The family hopes that by
: telling its story, a doctor or other
: parent will recognize the disorder and
: tell them what to do.
:
: "We don't know what to
: expect," said their mother, Vicki
: Eisenhardt, in the living room where
: she spends most of her time caring for
: her two youngest sons while her
: husband works as a carpenter. A
: 10-year-old brother, Tyler, is
: healthy.
:
:
:
:
: "What we know we've learned from
: Dalton," she said.
:
: The boys have a disorder called
: unbalanced translocation chromosome
: 15. Their mother explains the
: chromosome has an extra piece, a
: slight defect that affects every organ
: in the boys' bodies.
:
: A year ago, doctors gave Dalton six
: months to live, saying the damage to
: his lungs was too great.
:
: "Here we are a year later,"
: his mother said. "Doctors can
: speculate, but only God knows."
:
: "We're not giving up," added
: her sister, Kim Claus, one of several
: nurses who cares for the boys
: full-time.
:
: Dalton has been hospitalized 34 times
: and undergone 19 surgeries. Worrisome
: episodes where his skin grows gray and
: clammy have been increasing. Wyatt
: spent 100 days in intensive care after
: his birth. His problems have mirrored
: his brother's.
:
: Snuggled into his mother's lap one
: afternoon this week, Wyatt grinned at
: visitors as his brother slept, blue
: breathing tubes spilling from both
: their necks. On this day, Dalton was
: tired and would spend most of the day
: in bed. Wyatt was just up from a nap
: that had been interrupted to have a
: buildup of saliva suctioned from his
: tube.
:
: Dalton has an appointment next week
: with a specialist in New York City.
: This week the family was scrambling to
: secure a flight after learning the
: small airline that initially offered
: tickets could not fly the oxygen tanks
: the boys need to breathe because of
: federal aviation rules.
:
: "This is not a trip of luxury.
: This is a trip of necessity,"
: Eisenhardt said, frustrated at the
: obstacle.
:
: The boys' beds and shelves full of
: supplies and equipment have taken over
: the living room. Nurses, therapists
: and medical supply deliveries create a
: revolving door in the family home, and
: although insurance pays most costs,
: unseen expenses like the electricity
: needed to power the machines add up.
:
: But the family does not tell its story
: for pity - even their neighbors in
: this Cattaraugus County town of 2,400,
: have been unaware of their plight.
:
: The family keeps to itself, Eisenhardt
: said, but is at the point where
: answers are needed.
:
: "When you see your 4-year-old say
: he hurts, grabbing his chest and so
: tired he can't walk across the floor,
: you want to help," Eisenhardt
: said. "You're going to do
: anything and everything you can to
: help him."
:
:
: