When Lily was diagnosed on October 7, 2007...our world changed forever. We had the best medical care you could ask for, the best support from our family and friends, the best support from her school (a bunch of the moms even got together and bought us books on type 1), etc. The one thing missing was a diabetes community. I live in Houston. The 4th largest city in the US with 5 million people. Yet I could not find ONE other family with a child with type 1 diabetes. Not one. This was shocking to me. I spent countless hours on the Internet looking at sites like http://www.childrenwithdiabetes.com/ and http://www.jdrf.org/ . I got nowhere for a couple of months. Then, I met Molly, the executive director of the JDRF Houston office. She has a son with type 1 who is now an adult. Molly became my sounding board and a very dear friend.
That December, I organized a little seminar on stem cell research and it was there that I met my first family...through Molly and JDRF. Freyja (pronounced Fray-ya) has a little girl named Caris that is now almost 5. She was diagnosed a couple of weeks after Lily. Freyja and I immediately hit it off. We talked for hours on end about what we were going through. We discussed the need for emotional support and wondered why there was none?!?!
After serving on several committees within the hospital and trying to get them to start some sort of group, I gave up. I kept hitting walls with HIPPA laws. So, I started a yahoo group a few months later. We started with a group of about 12 of us that I had met through the JDRF or the hospital over a 9 month period. Starting the group is free and I input everyone's email addresses myself.
The yahoo group is basically an email service. You get signed up and you get emails all day from others in the group. If you reply, the emails go out to everyone. It is a way of connecting with other families. It is a way of spreading the word on events and new research. It's a great way to get advice and support.
What started as a small group of moms of type 1 children has now grown to over 200 families in the Houston Metro area. I get at least 5 new families a week wanting to join. It has become a great resource and we have built a community. For example, you have all read about Meredith Kelly and her transplant surgeries. Meredith's mom is on our yahoo group. She has gotten over 60 cards sent to Meredith in support for her. Our members have started planning huge events with guest speakers. We get together once a month for mommy happy hours. We have playdates. We have made close friends. We travel to the Children With Diabetes Conference together. It has been a HUGE help to many of us to be able to get online and send an email out to 200+ other families saying "My second child is peeing a lot and I am freaking out." When you wake the next morning, you have 30 responses of support or advice on what to do. It's an amazing thing.
The thing I love the most about running this group is seeing how much it helps the newly diagnosed families. I get the names from hospitals now in town and I add the families at their request. They typically sit back for a while and don't take part at first. Then, all of a sudden, you start seeing their names pop up constantly and they are filled with questions and emotions and our seasoned families are right there instantly replying with their wisdom and knowledge.
It's such an easy thing to do that I think all cities should have one! The JDRF was crucial in helping me get members added. They have given my email address to every family that has contacted them. We are now a very strong, very loving extended family here in our diabetes community in Houston. The FOTOD (Families of Type One Diabetics) has started in Dallas now as well from one of our members. I hope to see it spread since it has done so much good!!