 Sarah
Sarah, a Caucasian female, was born in July 2006 in New Jersey. Sarah was
born with low muscle tone and required a feeding tube for the first few
months after birth. Sarah was diagnosed with Prader-Willi Syndrome (PWS) at
six weeks-old. The Prader-Willi Syndrome Association (USA) defines PWS as “a
complex genetic disorder that typically causes low muscle tone, short
stature, incomplete sexual development, cognitive disabilities, problem
behaviors, and a chronic feeling of hunger that can lead to excessive eating
and life-threatening obesity”. As Sarah matures and develops, it will become
more apparent where she is on the spectrum of Prader-Willi Syndrome.
Behaviors related to the disorder will begin to present and cognitive
functioning can be assessed over the next few years. Please see the
Prader-Willi Syndrome Association (USA) website,
www.pwsausa.org, for more information.
Sarah was transferred at three months-old to a children’s hospital in New
Jersey and has been under their continuous care since that time. The
hospital is ready to approve Sarah’s discharge and state that she can be
cared for in a home setting. Sarah has been ready to be cared for in a home
setting since infancy however the hospital has been working with the birth
parents on a plan for Sarah. Sarah has been taken to family members’ homes
for over night visits on occasion.
Sarah receives a daily dose of growth hormone. She has recently begun
walking and can say about ten words. She is on a diet of soft foods and
liquids. Sarah is described by hospital staff as an adorable, happy little
girl with a sweet disposition.
Please contact Adoption Options, LSMNJ for more information about
becoming a potential adoptive family for Sarah.
Kerry Murphy, MSW, LSW (609) 699-4112 or
kmurphy@lsmnj.org
Maryann Sager, MSW, LSW (609) 699-4111 or
msager@lsmnj.org
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HYE IN
Hye In was born August 29, 2008. She was delivered by Caesarean section
due to fetal distress. Weakness in her crying, activity, muscle tone and
sucking ability were noted after birth. Various tests were completed and she
has been diagnosed with Prader-Willi syndrome (PWS).
Prader-Willi syndrome is described as a complex non-hereditary birth
resulting from an abnormality on the 15th chromosome. PWS typically causes
low muscle tone, short stature if not treated with growth hormone,
incomplete sexual development. A chronic feeling of hunger, coupled with a
metabolism that utilizes fewer calories than normal, can lead to excessive
eating and life-threatening obesity, but thanks to early education of
parents and growth hormone, many of this new generation of children and
adults with PWS are being kept slim and progress much more normally.
The family who adopts this special little girl will need to be prepared
to provide long-term support. As the child gets older, the food compulsion
makes constant supervision necessary. IQ’s run from moderately retarded to
normal. Most require some form of support in the school system. Children
with PWS are typically very sweet and loving, but social and motor
limitations, behavior problems and other medical issues can also exist.
Hye In has already begun a regimen of physical therapy. It is not
possible at this time to predict the type and degree of problems she will
experience due to her diagnosis of Prader-Willi syndrome. We hope that a
very special family will be able to accept this little girl and provide her
with her best chance for a good life. Fees for services to adopt Hye In will
be greatly reduced.
Please contact FAC for details. Kathy Luz at (586)726-2988
www.facadopt.org
FAC recommends that any one interested in adopting Hye contact the Prader-Will
Association (800-926-4797) as it is an excellent source of information and
support.
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