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.
Dear Readers: you can also keep up with JDRF’s Children’s Congress by following @JDRFAdvocacy or checking out the Children’s Congress website at www.cc.jdrf.org.
How awesome are they?!!!!
Go Goulds!! Good luck in DC. Go get ‘em!
Thanks Tons for sharing this Amy.
They are to be admired. Every one of them. So many people can learn from them as a family. Not just in the D area either.
So humbling. So cool.
My new Heros.
Amazing stuff. Thank you Ellen & Dave for all that you do!
Amazing story. What an inspiration.
Wow! What an amazing story and a wonderful family!
Thank you so much for sharing their story
Similar facial features as an explanation for why some family members got diabetes and others didn’t? That’s a bit of a stretch; some might say even crossing into the realm of superstition.
Amazing & inspirational! I have to say I feel for Gould’s on many levels, as my immediate and extended family is riddled with type 1.
Like most adults who were diagnosed as a child, I never realized everything that diabetes put my parents through. Listening and learning from Ellen, Dave, and all the parents in the DOC, has taught me (and many others) just how amazing parents of children with Diabetes are. And the Gould children are doing a great job,while teaching everyone they come in contact with about living a fantastic life with Diabetes!
OUTSTANDING FAMILY!
Kelly K
Upon learning that her second child had type 1 diabetes: “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.”
Wow, I imagine I would have a considerably different reaction. I guess I’ll leave it at that.
I’m not judging, but I’m surprised that they continued to have children after more than one of their kids had been diagnosed with type 1. I have to imagine that I would *stop having children* if one or, especially, two of my kids turned out to be diabetic. As a type 1 diabetic I’ve done a lot of thinking about weather I *should* even have children – passing along the disease and likely inflicting it on a future generation. It’s certainly not an easy decision…
@pking: I would think that given the choice, any of us would rather choose to be born with diabetes than to not be born at all. So go ahead, don’t worry so much — have a baby if you want to; I doubt you’ll regret it.
I hope that, in the future, people will be responsible enough to get themselves genetically tested before having a zillion children. I am a type 1 with a type 1 sibling and there is no way I would have a genetic child. I will adopt when the time comes. The world is horribly overpopulated to begin with, and considering my type 1-riddled genepool, I would not consider biological parenthood. In my view it’s simply irresponsible and inconsiderate of others.
Amy, thank you for the opportunity to share with you and your readers our family’s struggle with type 1. We think it necessary to respond to a few of the comments above.
Regarding the comment from m who said: “Similar facial features as an explanation for why some family members got diabetes and others didn’t? That’s a bit of a stretch; some might say even crossing into the realm of superstition.”
Our comments went on to say that we discarded that theory after Sam, who doesn’t look much like the first two, was diagnosed. We agree that theory was a stretch and not valid. But as parents, you grasp at a number of theories as to why something like this is happening to you.
pking said: “Upon learning that her second child had type 1 diabetes: “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.”
Wow, I imagine I would have a considerably different reaction. I guess I’ll leave it at that.”
Our answer was incomplete. After Sarah’s diagnosis there was anger, tears, fear, frustration, etc. Even though Patrick had been diagnosed a year and a half earlier we never imagined another child would be diagnosed. But she was, and it was devastating. But Ellen also realized that we had to get more involved and needed to be a part of the cure. Something was going very wrong in our family and we hoped the scientists could learn from us. Like the thousands of other type 1 parents who give so much to the fight, we had to soldier on.
One comment questioned why we continued to have kids after we had multiple children diagnosed. Our sixth child was born before our first was even diagnosed. Six months after our seventh child was born, our second child was diagnosed. So, only one child was born after our second child was diagnosed. We did bank cord blood for our seventh and eighth children in hopes that it may someday help the others. And I assume the vast majority of type 1s would agree with m’s comment above: “I would think that given the choice, any of us would rather choose to be born with diabetes than to not be born at all.”
Regarding Lauren K’s comment: “I hope that, in the future, people will be responsible enough to get themselves genetically tested before having a zillion children. I am a type 1 with a type 1 sibling and there is no way I would have a genetic child. I will adopt when the time comes. The world is horribly overpopulated to begin with, and considering my type 1-riddled genepool, I would not consider biological parenthood. In my view it’s simply irresponsible and inconsiderate of others.”
First, I’m very sorry that you and your sibling have type 1 – we know how tough that is. But there are a number of type 1s who have kids who never get type 1 – in fact, the majority don’t get it. Obviously, we have different views on child-bearing. We view every one of our eight kids as gifts from God and we are very happy with the decisions we made. We are responsible for our children and, like all parents, want nothing but the best for them. And we want them to be healthy, which is why we will continue fighting for them, for you, your sister and the thousands of other type 1s.
Dave and Ellen Gould
Which antibodies were detected? anti-GAD, anti-islet cell or other? I’m very curious about this…especially after reading about coxsavirus B strain which produces antibodies against it which are also anti-GAD. So after an infection with this virus, it’s very likely to become diabetic. I got diabetic this way when I was 34.
Go Goulds! I couldn’t agree more when you say that every child is a gift from God! I have been a Type 1 diabetic since age 5. I am the only one of my parent’s six children (and the youngest) to have diabetes. I have one brother who is “fighting it off”, but is obviously not a Type 1. My parents both lived to age 80 (my father died just this year) and they do/did not have diabetes. As far as I know, none of my grandparents did, either. I have two sons (the youngest is now 20) and neither of them have diabetes. I would say genetics had little to do with my diagnosis. I have often wondered if there was a “reason”. I am just glad I was born after the discovery of insulin and the other advances in medicine.
I hope others will talk about those Type 1′s who were diagnosed in adulthood. I was diagnosed at age 49, hospitalized w/ diabetic ketoacidosis. There was some confusion as to whether treat me as type 1 or 2. I was a borderline Type 1 / type 1.5 or LADA.
since diabetes is an autoimmune disease (autoimmune disease run in pairs), there should be a discussion as to what the pair is and how it affects the diabetes.
Thank you, LSH for your comments! Way to go!
Dear Ellen and Dave,
I congratulate you on your many accomplishments! You were remarkably gracious and courteous in your response to several of the previous comments–I am not sure I could be mature.
I have two children, ages 5 and 3, with type 1 diabetes. You are an inspiring family! Thank you.
Great Job
Great Job Gould Family- we are in Canada – have 4 children & the third just diagnosed a month ago. our first, Maddie was diagnosed just before her first birthday & now is 16 . our second Luke was diagnosed 10 years later & now 15 years old. our third child Sam age 10 just diagnosed. your exactly right when you say that it takes team work! our 4th child Cole is 8 & now we are crossing our fingers for him. the two older children are awsome with Sam , helping him out with his “new routine” . i believe that things will get better with technology to help keep the kids healthy- & who knows maybe someday a cure! Good Luck & take care.