As people with diabetes or parents of children with diabetes, we all know how difficult it is to manage the never-ending balance of food, insulin, exercise and myriad of other endlessly circumvolving variables. Now imagine having to handle all of that turmoil for FOUR children.
Meet Ellen and Dave Gould, parents of EIGHT children ages 17 to 2 years old — four of whom are living with type 1 diabetes. This week, Ellen, a stay-at-home mom, and Dave, the Vice President of Advertising for the daily newspaper, the Tennesseean, will accompany four of their children, Patrick, 17, Sam, 12, Sarah, 10, and Oliver, 6, as they embark on an adventure of a lifetime. The Gould children were named Children’s Congress delegates to the sixth biannual JDRF Children’s Congress, taking place this week in Washington D.C. While there, Ellen and the Goulds will testify before Congress about their unique experience managing diabetes. They will also have the opportunity to meet with their Senators and Representatives, perform the Children’s Congress theme song “Promise to Remember Me,” and hopefully meet singing teen hearthrob Nick Jonas!
Ellen took some time to share their story with us before heading off to our nation’s capitol:
DM) So when did all the diagnoses in your family happen? Did the oldest one get diagnosed first?
EG) Patrick is our oldest child and was diagnosed first, in July 2004, when he was 12. He had all the classic symptoms: weight loss, extreme thirst, etc. We took him to the doctor and he was quickly diagnosed. He was admitted to the hospital for a few days.
In January 2006, we noticed our then 6-year old daughter Sarah was losing weight and she had wet the bed a few times. We grabbed Patrick’s meter one Saturday morning and tested her. She was 311. I called my pediatrician and he said, “She has it too. You can bring her in and I will tell her.” An overwhelming sense of peace came over me as I hung up the phone. I felt that we were going to be part of the cure. The scientists will surely be able to learn something from our family.
Because we had two kids with type 1 we agreed to participate in a Trial Net Natural History study. Another part of the study looked at antibodies that may be prevalent in the blood of our non-type 1 kids that would indicate the possibility of type 1. In March 2007, we participated and our doctor called during Sam’s 10th birthday party to tell us that he and Oliver had diabetes antibodies present in their blood. They were both subsequently tested through a two-hour blood glucose tolerance test. Sam failed that test. He already had diabetes. At least we were able to watch it very closely. He started showing symptoms within six months and he became insulin dependent.
Three-year-old Oliver also had the antibodies but he was not type 1. We agreed to enter him into an oral insulin trial to try to delay or prevent the disease. We were not able to prevent it. Despite our best efforts, he was diagnosed in October 2008.
DM) Did you notice any patterns in their diagnoses? I know researchers are always trying to find clues in family cases. Has your doctor said anything about it?
EG) After Sarah got it we had a theory that because she and Patrick had similar features that maybe there was something there. Oliver has similar features but Sam doesn’t look like them at all — so that theory went bust. We have all submitted blood for a family history study, but we may never hear the actual results.
DM) How do you manage taking care of diabetes day-to-day while also raising four other children without diabetes?
EG) It’s tough but we have just accepted the fact we have a busy life. Three of the four are taking shots and Sarah is on a pump. The two older boys who are non-type 1 (ages 15 and 13) help Oliver with the testing, carb counting and regularly give him shots. The two young non-type 1 girls (ages 2 and 3) just think it’s part of a normal life. The hardest part is the continual carb counting, remembering who ate what and making sure everyone takes their shots. It’s definitely a team effort. And Patrick is a great type 1 role model for the other three.
We do however try to offer a balanced diet that is healthy for everyone. The non-diabetic kids don’t see our food choices as being about diabetes. It is about eating a low-fat, low-sugar diet that is as healthy as we can accomplish.
DM) So they help take care of each other, but does each kid have their own approach to blood sugar management?
EG) They all do many similar things. For example, those on shots take both Novolog (after meals) and Levemir (once a day). They all have different ratios, so we have to keep all of that straight. Everyone is extremely supportive of each other and is concerned about one another.
DM) How involved are you (the parents) with your children’s diabetes management? With the older children helping the younger ones, are they all fairly independent at this point?
EG) We’ve very involved. As a parent you just feel responsible, even for a 16-year-old! Young people believe that they are going to live forever and don’t think through the long-term effects. We are on them about keeping up their log books and we discuss their numbers and shots after every meal. If I am around they all want to talk to me about carb counting after every meal. Before meals, all but Oliver tests independently. Oliver is trying to test by himself. He needs help at times. We give him his shots. The other children give themselves shots. Sarah is now able to change her pump site on her own. She can do everything that has to be done for her pump. The boys do not want help with their shots.
The hardest part is at night. Our first rule is anyone below 100 before bed must eat a snack. Our kids are very active so frequently after an especially tiring day (basketball, lacrosse, football) we will test at 2:00 or 3:00 in the morning. We had a terrible low episode with Sam several months ago where we heard a banging in his room early one morning and found him pretty incoherent. He was literally passed out and banging his head against his desk, which was banging into the wall. It took 20 minutes to get him back to normal, so every noise we hear at night gives us a good reason to get up.
DM) How do they fare in school?
EG) Very well — and that’s not just their parents talking! Patrick is a member of the National Honor Society and makes Honor Roll every quarter/semester. Sam gets straight A’s and Sarah got all A’s and one B on her report card last year. Oliver starts Kindergarten next year.
Diabetes management in school is pretty smooth too. At the the elementary school, we have a full-time nurse who makes sure they come to her office to test before lunch, then they stop back by to make sure they have the carb counting right and give themselves insulin. There is no nurse at the high school. Patrick is much more self-sufficient. He takes a lunch from home so he knows how many carbs are in it. He also checks his blood sugar frequently to keep on top of things.
DM) How did you get involved with the JDRF?
EG) After Patrick was diagnosed, we did a lot of research and just called the local office. Dave joined the local branch’s board a year later and will be President of the Board for two years starting in July.
DM) What do you hope to tell Congress when you testify this week?
EG) We want them to understand what it’s like living with this disease. Statistics are one thing, but when you can put faces on the story and they can see what this disease is doing to one family, hopefully they will continue to provide the funding to help us find a cure. Even though therapies have come a long way to help manage this disease, insulin is far from perfect. It is so hard to get that delicate balance of diet, exercise and insulin right to produce blood sugars within the normal range. We need a cure.
DM) What do the kids think about being “diabetes advocates”?
EG) They are very excited. The three oldest type 1′s attend the Tennessee Camp for Diabetic Children (TCDC) in the summer so their network of type 1 friends is pretty broad. Patrick is now a counselor at the camp. They aren’t embarrassed by the disease. They want to help.
DM) What do the kids hope to achieve with this advocacy in the short-term?
EG) I think they understand that our family has a pretty compelling story — at least one that gets people to sit up and take notice. If we can turn that into more people helping us find a cure, then we have done what we need to do.
Thank you Goulds, one and all! We’re humbled how you make it all sound so easy.