The CHI Patient Champions, Amy Sommers, Pam Williams, and Randy Hart came over for lunch last Friday. These three wonderful women are amazing resources for all parents bringing up children with congenital hyperinsulinism (HI). Their contact information is included at the bottom of this post. Here’s a little bit about our visit and our collective past.
We’d come full circle. Four HI moms having a leisurely lunch on a beautiful autumn day. A certain carefree feeling in the air. The youngest of our HI kids now fifteen. We met for the first time so many years ago, twelve to be exact, in a chat room. It was so unusual in those days to connect over the Internet. But we were desperate, willing to try out whatever technology had to offer in order to connect with other parents bringing up babies and children with a disease that caused so much anxiety and gave no respite. Our place of meeting back then was the Hyperins Yahoo Group, started by Jim, an HI dad from Boston. The Group is still going strong today. It was revolutionary at the time. We shared everything from how to coax our children into eating to where to go for the best medical care. We disclosed our worries about developmental lags and wrote joyously of milestones. There was so much to worry about and keep track of, and we shared it all.
When we finally met in person for the first time in 2003, at the first Congenital Hyperinsulinism Family Conference, it was like a homecoming. We had already communicated so much over the Internet. There was so little that had to be explained. All was understood. We met again many times over the years at the Congenital Hyperinsulinism International conferences and dinner meetings.
And a funny thing happened along the way. Our medically fragile children grew up! Granted, all five of our HI children still manage their blood sugar levels, but they are leading full lives and are not defined by the disorder they share. The blood sugar issues haven’t gone away but they don’t control these teens and young adults who are so busy trying to make a go of it in high school, college, and the pursuit of a career. John is working in film, Colleen’s a budding photographer. Ben lives to perform music and theater, Katelyn is studying to be a special education teacher, and Rianna is pursuing an academic career in anthropology. They are young. Their goals and focus may change. What matters is they have a chance to reach for their dreams.
Here’s a little more about these three veteran parents who can provide support and valuable information to HI 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 many 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 high schooler and college student with HIHA GDH. She is also married to Jeff, who was diagnosed with HI as a baby. Suffice it to say, Randy has lots of HI experience and is an expert on so many topics related to the disorder. In addition to being an HI parent, Randy has served on the board of CHI since 2005. She has organized many CHI family events. 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. Alternatively, she can be reached via her Randy Murray Hart facebook page.
