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BIRTH DEFECTS AND GENETIC DISORDERS: FINDING HELP

Resources to assist you in getting aid and answers

BY:MARC LICHTER

Want to find information and assistand specific to a birth defect or genetic condition that has impacted your life? Try these links:

 

Autism: www.autismspeaks.org

 

Cerebral Palsy: www.ucp.org or www.cerebralpalsy.com

 

Congenital Heart Defects: www.pediheart.org

 

Cystic Fibrosis: www.cff.org or www.cysticfibrosis.com

 

Fragile X Syndrome: www.fragilex.org or www.fraxa.org

 

Down Syndrome: www.ndss.org or www.downsyndrome.com

 

Marfan Syndrome: www.marfan.org or www.americanheart.org

 

Sickle Cell: www.scinfo.org or www.sicklecelldisease.org

 

Spina Bifida: www.sbaa.org or Children with Spina Bifida Resource Guide for Parents

 

Tay-Sachs: www.ntsad.org

 

Also try the March of Dimes website for more information on these and other conditions: www.marchofdimes.com

 

Comments

Birth Defect

Whenever I see children struggling with defects, my heart shiver and have pity on them. You aren’t much familiar with the sol-called Mermaid syndrome, probably. Mermaid Syndrome, or Sirenomelia is a condition in which the two legs are joined together, making one leg in effect. It is usually accompanied by kidney dysfunction and bladder problems. Death occurs within one to two days of birth. There are three known survivors – Milagros Cerron, Tiffany York, and Shilioh Peppin. All 3 required extensive surgeries including transplants and bladder and bowel constructions and still have complications. It sounds cute, but Mermaid syndrome takes more than a few quick personal loans and some pills to live through.