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Versión Español de este artículo (Spanish Version)
By Kathy Springer, Parent Leadership Participant, Round Rock, TX
Abstract: A parent leader is organizing an event for Charge Syndrome families, and need volunteers.
Key Words: News & Views, CHARGE Syndrome, retreat, families, volunteer opportunities
Texas Charger’s is a group of Texas families, friends, and professionals who are dedicated to helping children and young adults who live with CHARGE Syndrome <www.chargesyndrome.org>. CHARGE Syndrome is one of the leading causes, and the most commonly identified syndrome causing deafblindness in the state of Texas. The Texas Deafblind Census in 1993 accounted for only 12 deafblind children with CHARGE Syndrome. Now in 2006 it showed 64, and increase of 433%! The word “CHARGE” comes from the first letter of some of the most common features seen in this syndrome. C – Coloboma or Cranial nerve abnormalities; H – Heart malformations; A – Atresia of the choanae; R – Retardation of growth and /or development; G – Genital or urinary abnormities; E – Ear abnormalities, hearing loss. These children have several medical complications and spend a significant time in and out of hospitals.
The families are faced with not only the overwhelming task of caring for these children, but also with the expense of medical bills. Texas Chargers is planning a stress free day for the families to connect with others and share the joys and challenges of raising someone with special needs. This retreat will include information for families; carnival activities such as train rides, face painting, cotton candy etc.; and a trip to the swimming pool or movie theater/arcade. Lunch will be provided.
When: October 7th 2006 8am-5pm.
Where: Peaceable Kingdom Retreat, Killeen Texas <www.peaceablekingdomretreat.org>.
Why: To Help Charge Syndrome Children & their families have a day of support.
Volunteer Opportunities: Nursing care, day care, one-on-one w/ Charger, sign interpreter, Spanish interpreter, volunteer for various carnival activities, photography.
We are dedicated to helping give the Texas Charger’s a better quality of life. Please contact Cathy Springer at <email@example.com> or 512-255-3176 to sign up!
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