An HI diagnosis is often a crisis for the family of a newly diagnosed child. The family must adapt to the responsibilities of caring for a child with very specific needs. To help new families cope with it all, CHI is embarking on a new program linking families of the newly diagnosed with experienced HI parents who understand the needs of HI families and have the capacity to support these families while providing them with valuable information.
Our patient champions are three veteran parents who can provide support and valuable information to parents. They are:
Amy Sommers: Amy’s daughter, Rianna, born with severe diffuse disease, is now a successful college student living on her own. The early years were very challenging. Rianna had a 98% pancreatectomy as a baby and a gastrostomy tube until she was 11. She became insulin dependent at age 16. Amy lives on Long Island in New York. Amy has attended all of the Congenital Hyperinsulinism Family events and was a speaker at the 2010 conference in San Diego. Amy is a wonderful person to talk to and has an enormous amount of information. She can be reached at 516-935-2303 or by email at aspeech@optonline.net.
Pam Williams: Pam Williams’ son, John, is a recent college graduate! Pam went through a very long odyssey before discovering the type of HI her son was born with, which is GK HI. Pam has also attended all the CHI programs and has also been on a panel at the 2010 San Diego conference. Like Amy, Pam is a great resource with lots of experience and a wonderful warm way about her to match. Pam also lives on Long Island in New York and can be reached at 631-754-9386 or by email at j.o.williams@juno.com.
Randy Hart: Randy has two daughters, a special education teacher in elementary education and a college student at Rutgers University. They both have HIHA GDH. Randy’s husband was diagnosed with HI as a baby. Suffice it to say, Randy has lots of HI experience and is an expert on many topics related to the disorder. In addition to being an HI parent, Randy is a founding member of the CHI Board of Directors. Like Amy and Pam, Randy is a lovely person and a wonderful communicator. Randy lives in Central New Jersey and can be reached at 908-904-9505 or by email at rahart@comcast.net.
