Our son, Devonne, was born with a complex genetic condition called Cornelia de Lange Syndrome (CdLS). This syndrome can result in mental, physical, and developmental delays as well as numerous health challenges. We have a tremendous opportunity to help Devonne and our entire family by attending the CdLS National Conference to be held June 26-29,2014 in Orange County,CA. Please consider helping us attend this life changing event.
Devonne is developmentally delayed, has hearing and vision loss, is hearing impaired, and has gastro-intestinal issues. Though Devonne has multiple medical problems, he is an affectionate, sensitive, happy and fun-loving child who brings our family great joy. Through our early intervention services, we have seen Devonne grow and develop in an encouraging way.
Unfortunately, we have felt alone in our efforts to adequately and effectively raise our son. With so many unanswered questions and unfamiliar situations we face on a daily basis, we feel attending the conference would be extremely beneficial to our entire family. Just knowing that we will meet other families at the conference who face the same challenges that we do inspires and comforts us.
In addition to sharing experiences with other families, we will also consult with CdLS experts who specialize in the medical, educational, and social consequences of the syndrome. Informative workshop sessions on practical subjects such as behavior issues, feeding difficuties and communication are also available.
Attending this conference is a financial challenge. The cost of registration fees, lodging, food, transportation, and educational materials will total approximately $9,500. Would you please consider making a monetary gift to help cover our expenses? A gift of any size will truly be appreciated. Thank you for your consideration.
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