Living with diabetes is a challenge for anyone, but imagine caring for a family in which six of eight children are living with type 1! Yes, that’s right: A family in Utah has six of eight brothers and sisters living with diabetes, and that could very well be a record (!), though not one that any family desires.
Amazing D-mom Kirsten Schull has been advocating on behalf of her six children with diabetes (CWDs) since the first diagnosis came 15 years ago. Since then, they’ve gone through every level of schooling and just about every type of D-situation imaginable. Not to mention the basic issues of differing D-routines and what must be the extraordinarily high cost of medical supplies for the family.
We are truly in awe — and delighted to be sharing their story today, via our correspondent Mike Lawson:
I struggle to find matching socks. It’s not that I don’t own many pairs of matching socks and therefore the task is challenging. My problem is that on many mornings, before drinking my coffee, the act of opening the sock drawer and using my mental energy to pick out two identical socks is just too much to bear.
For this reason, I am blown away when I hear about parents who wake up each morning and not only remember to feed their children and put matching socks onto their young feet, but even sometimes manage to find a matching pair for themselves.
Now throw diabetes into this mix, and I’m dumbfounded.
There are many great diabetes advocates who have became engaged and involved because their children have been diagnosed with diabetes, but what’s even more astounding to me are the super-parents out there who juggle multiple diagnoses in their families.
Did you know that having one child with diabetes statistically raises the risk of your other children developing diabetes? Yes, according to Joslin Diabetes Center, if an immediate relative (parent, sibling, son or daughter) has type 1 diabetes, the risk of a child developing type 1 diabetes is 10 to 20 times the risk of the general population.
D-mom Kirsten Schull living in Utah has seen the impact of these stats firsthand. Kirsten has eight children and six of them have been diagnosed with type 1 diabetes. She said that she was unaware of the increased risk of subsequent children developing diabetes after her 7-year-old son received the family’s first diagnosis about 15 years ago.
Her kids are currently ages 21, 19, 16, 13, 11 and 7. She actually told us that HIPPA privacy rules prohibit her from saying when each of the kids was specifically diagnosed (?), but the D-mom says all the diagnoses came between ages 5 and 13 years old. One of her kids is still “honeymooning” after being diagnosed a year ago, and it’s been “a long, slow decline into the disease” for that child, who took part in a TrialNet study for five or six years before crossing the blood sugar threshold of 200 mg/dL after a two-hour fast (wow!).
The last three Schull kids were only diagnosed because of the TrialNet study that tested first for antibodies, and indicated all six kids had antibodies as early as eight years ago.
“I feel so sad when I think about it,” Kirsten said. “But honestly, to keep up with our crazy life, I put deep contemplation on the back burner, deal with each day and each new situation as it comes. I’ve mourned the loss of their freedom and health and simplicity, and each child has had to do that for him or herself as they’ve come to the edge of the abyss.”
Curious about whether the Schulls really hold the record for the most children being diagnosed, we asked Kirsten. “We don’t know of any other family with 6 kids with diabetes. Our doctors don’t either, but I wouldn’t know where to look for a definitive answer on that. Not a great record to hold, frankly, if we have the most, but my kids are awesome, and deal with it very well. They are very supportive of each other, and it’s a rare dare they complain about having diabetes,” she says.
We also took the question to a handful of experts with some insight into families with large numbers of CWDs. No one seemed to know of any other families with six of eight kids, although no group or institution appears to track that information.
Founder of the Children with Diabetes community Jeff Hitchcock who’s met thousands of families dealing with type 1, says he hasn’t heard of other cases with so many CWDs in a single family. An online TuDiabetes discussion group on the topic doesn’t list any info on that many CWDs in one family, while nationally-known experts and D-advocates like Lorraine Stiehl, who worked with JDRF, and prominent CDE Gary Scheiner, who’ve both traveled the country on the type 1 circuit say they also haven’t. Neither has Joslin Diabetes Center, which reports it has neither stats nor any anecdotal knowledge of that many D-kids in one family.
Even TrialNet’s Clinical Research Administrator, Christine Webber, hasn’t heard of that large amount of CWDs in one family either. She says the closest she knows of is the Gould family in Tennessee (who the ‘Mine interviewed in 2009), in which four of eight children have diabetes. Webber said a few years ago, a study called the Type 1 Diabetes Genetics Consortium studied families with two type 1 siblings, but it didn’t track how common these families are among the general type 1 population.
Through the years, Kirsten and her family have faced myriad challenges when caring for six CWDs. But they’ve also found positives in learning from each kid’s experience and applying that to the others — especially when it came to school. They’ve been in every grade level from kindergarten to college, and Kirsten says each age group and grade level has its own unique challenges.
“The younger they are, the more support they need, but the older kids need reminding, love, support and encouragement as well,” she says. “I find that a lot of what each child needs is personality-dependent. For example, one child has never wanted me involved at school in her diabetes care, and as long as she does well, she is free to handle it herself. The youngest would like me to take care of it completely and never ask him to think about it. Each parent needs to fine-tune what they do with their child, make it work for them, and give their child the responsibilities and rewards that go with good care.”
For mom Kirsten, she’s found help in knowing how to manage her children’s diabetes by turning to local JDRF chapters, support groups and online sites.
Many of the problems the Schulls have faced are financial ones, and they often cut corners to help stretch their medical budget — like refilling just one insulin prescription at a time because of high co-pays, and dividing that insulin up between the kids.
“One person with diabetes is expensive,” she says. “Now multiply that by six.”
Kirsten’s husband is a safety director for a manufacturing firm, while she is self-employed as a legal deposition proofreader, giving her the ability to work from home and provide the necessary on-call support for her CWDs.
“I tip my hat to families that manage work and school seamlessly, but we seem to have a crisis or two each month, so working at home suits me well,” she said.
All PWDs are unique, and according to Kirsten that is still very much the case when it comes to siblings with diabetes. Kirsten said that she doesn’t go out of her way to prepare “diabetes-friendly” or low-carb meals at her home because each of her children has a unique management plan. “I make what I’m going to make and then they count carbs and adjust.” Four of Kirsten’s children are using insulin pumps, one is doing multiple-daily injections and the one still in the honeymoon phase has not yet started to inject insulin.
Kirsten has become a passionate diabetes advocate and has written articles about raising children with diabetes. Because of her extensive knowledge on educating educators about diabetes, she often writes about the difficulties children face when dealing with diabetes at school. She has also collaborated with Lilly Diabetes and Disney to help create content for a website that assists parents that need help raising CWDs.
Unfortunately the Schulls high number of children with diabetes is not as unique as it might sound. We have been hearing more and more stories of families with multiple type 1 diagnoses. Another D-mom dealing with this, who’s familiar to many active in the DOC is Meri Schuhmacher; three of her four sons have type 1.
Meri has compared raising multiple D-kids to a Hunger Games challenge: “The odds are never in our favor. It’s so rare for all three boys to have dialed-in basal rates and for all of us to get a good night’s sleep.”
Both Kirsten and Meri can talk about the challenges of raising multiple children with diabetes, but they also were both quick to point out some of the upsides of having multiple diagnoses in the family.
“Around here, diabetes is normal,” Meri says, noting that when her most recent son was diagnosed, he expressed happiness because it made him more like his older brothers. “There is no ‘poor me’ attitude since it’s just a regular thing.”
Kirsten says she thinks diabetes has helped her children be more supportive of one another and more realistic about money. “My kids know that diabetes is expensive, and they don’t complain or ask for a lot.”
If you have multiple children and one of them has diabetes, you might consider signing up for the TrialNet clinical study, an international network of researchers exploring ways to prevent, delay and reverse the progression of type 1 diabetes. They offer annual screenings to children for free, to look for diabetes-related auto-antibodies that usually appear years before type 1 diabetes develops. Your participation will help further the research, of course.
While it’s clearly a struggle to raise children with diabetes, we’re in awe of Kirsten and Meri for finding a silver lining. They both have really great, grounded kids, and wonderful relationships with them.
“There is sorrow and chaos and anger with this disease, inconvenience and huge expense, but there’s also hope for the future,” Kirsten says, noting that she’s confident a cure will be found and there will be amazing treatment improvements along the way.
After learning about the kind of preparation and work they have to put into each day, I think that I can muster up some more energy to match up my socks each morning.