Hello my name is Christina Yauch. My daughter,
Victoria, was diagnosed with Cri Du Chat Syndrome at a six month well visit in December 2010. Cri Du Chat is a very
rare chromosomal anomaly and most doctors have never seen a case of Cri Du
Chat.
Each year in the United States, approximately 50
to 60 children are born with 5p- Syndrome (five p minus), also
known as Cat Cry Syndrome or Cri du Chat Syndrome.
5p- Syndrome is characterized at birth by a high pitched cry, low birth weight,
poor muscle tone, microcephaly, and potential medical complications.
"5p-" is a term used by geneticists to describe a portion of
chromosome number five that is missing in these individuals. Children born with
this rare genetic defect will most likely require ongoing support from a team
of parents, therapists, and medical and educational professionals to help the
child achieve his or her maximum potential. Years ago, it was common to place
children with 5p- Syndrome in institutions with other severely mentally impaired
individuals. During the early 1980s, research revealed that those raised in
family settings with the benefit of early intervention programs made remarkable
progress, far exceeding the expectations of doctors who first described the
syndrome. Most individuals who have 5p- Syndrome have difficulty with language.
Nearly all children with 5p- Syndrome have poor muscle tone when they are
young. Other characteristics may include feeding difficulties, delays in
walking, hyperactivity, scoliosis, and significant mental impairment. Both
children and adults with this syndrome are usually friendly, happy, and enjoy
social interaction. With early and consistent educational intervention, as well
as physical and language therapy, children with 5p- Syndrome are capable of reaching
their fullest potential and can lead full and meaningful lives. (Taken from 5p-
Society Website)
Victoria has been using an iPad since she was
about 8 months old. It has been a wonderful experience for the whole family.
She uses the iPad to teach basic cause and effect skills and as a motivator
during PT and OT sessions. She is also learning communication through choice
making apps and the yes/no app. Victoria uses the Talkboard app to let us know
she wants to eat or drink. We created a board with a picture of a bowl, a toy,
and a photo of herself. If she is hungry, she taps the bowl and it repeats back
to her "breakfast" I love the app because it's easy to use and adapt
to your child's needs. We use the same app to involve Victoria in repetitive stories.
I am also planning on making her a photo album with the entire family's photos
using the My Family app. The My Family app allows you to add photos along with
a recording of the name of the person in the picture. She can tap the photo to
move through the album.
Victoria is doing extremely well with the iPad
and I am very happy we introduced her to it so early. She had really progressed
since the introduction of the iPad. It is so versatile, in that it can be used
for entertainment, learning, communication, etc. I really like the fact that it
can grow with the child. You can download the appropriate apps for your child's
age and cognitive level. Victoria's favorite apps are listed below:
We have been devastated, humbled, and blessed
since her diagnosis. Victoria is
a beautiful, happy baby who lights up the room with her smile and giggles. She has
taught everyone around her more in her short life of 20 months than most will
teach their entire lives. She continues to progress and surprise us every day. Through her hard work and the hard work of her phenomenal
therapists, Victoria is already
surprising the medical community with her accomplishments. She is absolutely
amazing and makes an impact on everyone who meets her. To learn more about Cri Du Chat Syndrome, please visit www.fivepminus.org .
