During the first full week of May, the 5p- Society of North America, along with support organizations from over 70 countries, are bringing awareness of Cri du Chat Syndrome, also known as 5p- Syndrome, a permanent deletion on the "p" arm of the 5th chromosome.
Each year in the United States, approximately 50-60 children are born with 5p- Syndrome. It is characterized at birth by a high-pitched, "cat-like cry" caused by an underdeveloped larynx and weak breath support. Other characteristics include low birth weight, poor muscle tone, microcephaly and potential medical complications. The severity of the disorder varies among individuals and can be considered a spectrum disorder. Symptoms go from mild and unnoticed, which causes a delay in diagnosis, to severe where the individual requires to be cared for 24/7 and will require ongoing support from a team of parents, therapists, medical professionals, educational professionals and extended family members to help the individual achieve his or her maximum potential.
The 5p- Society's mission is to maximize the quality of life of an individuals with 5p- and their families. One way to improve the lives of individuals with the syndrome is by creating a Caregivers Guide with current information on diagnosis, therapies, educational goals, transition and adult living. Information for the guide is currently being collected with the hopes of having it completed by the end of 2017. It is also committed to connecting parents to network, vent and share information through their Social Media platforms.
"Families who have felt alone in their journey of raising a child with Cri du Chat Syndrome can now find immediate resources, support and information." Laura Castillo, Executive Director, 5p- Society. "This was not available to me 29 years ago when my daughter Katie was born." "Learning about each other's child, their strengths and weaknesses has become extremely educational and has created new and unique conversations." "We'd love to see more research done on the various genes affected on the 5th chromosome and the correlation with the characteristics of the syndrome."
"Individuals with Cri du Chat Syndrome are Super Heroes and strive to be the best that they can be despite their limitations" Jennifer Wong, President, 5p- Society. "Awareness of self is also an important aspect of having a child with a disability. If someone is able to have a basic understanding of their self, and diagnosis, then they are able to understand that their struggles or inability to do something is not a shortcoming of them, but a result of their diagnosis. Therefore creating greater confidence in one self."
In an ongoing effort to raise awareness, members and supporters are encouraged to participate in events throughout the week.
For more event ideas, please visit https://fivepminus.org/event/awareness-week-events/?event_date=2017-05-01
The 5p- Society was founded in 1986. It is a non-profit organization that works to empower families with knowledge about the syndrome, facilitate connections, support research, advocate for improved prognosis and to enrich the lives of individuals affected by Cri du Chat Syndrome and their families. Visit 5p- Society on the web at http://www.fivepminus.org