We live in a connected world, but for kids and teenagers living with type 1 diabetes, it can be hard to find the resources and communities that click for them, as many sites are understandably geared toward their parents. Facing a new diagnosis, it’s especially scary for kids, and they might have questions that are different from the ones their parents have.
Brother and sister duo Mathias and Eliana Salmon, well-known youth advocates in the New York area, dreamed of creating a place where kids with T1D (and their siblings!) could come to find community, answers, and support, particularly in the early days post-diagnosis. The enterprising young teens launched a website called SweetSiblings.org, a site for kids and by kids.
With whimsical, colorful imagery, resources in English and in Spanish, and a blog where they cover topics from device reviews to government advocacy opportunities to what’s in the diabetes news, they are building the site out to be a friendly, approachable hub for kids with T1D.
ASweetLife had the opportunity to reach out to these two Sweet Siblings and find out a little bit more about their attitudes, their approach, and their aspirations.
Mathias, you were diagnosed with type 1 diabetes pretty young – age 3. What are your memories from that time period? Was it scary? What was helpful to you?
Mathias: My dad was on a business trip when I got diagnosed and when he came to the hospital – he brought me a little set of Delta airplanes, which I still have. Every day my mom’s friend would come to the hospital and we played airplanes while my parents spoke to the doctors. Since I was only three I can’t remember feeling scared but looking back I can imagine that I was frightened and feeling very displaced.
Eliana, you were a few years older than your brother and were likely more aware that life was suddenly quite different in your family. If you could give advice to parents who might be reading this for how to help an older sibling navigate a diabetes diagnosis in the family, what would you tell them?
Eliana: I was six years old when my brother was diagnosed with diabetes. I definitely noticed a change in the family and more than anything, I wanted to understand. My brother was hospitalized for six days when he was diagnosed which was slightly frightening for a young child who automatically associated “hospital” with “illness.” I would tell families to make sure to explain to a sibling what is happening and to allow them to understand, to the best of their ability, that their sibling has diabetes. It is undeniable that attention will shift to the brother or sister that is diagnosed and understanding the reason why will be helpful for the other sibling. Even as a six-year-old child, I felt that I was learning about diabetes alongside my parents and that awareness has allowed me to be a supportive sister from the very beginning.
You two were doing some impressive youth advocacy work on a local level, speaking at New York area events, helping newly diagnosed families, etc., and had the idea to take it online, right? Were either of you already active online on any social sites? What kind of response have you had from young people finding SweetSiblings.org so far?
Eliana: I personally was active on social media websites, which led me to realize how powerful they can be as a way to reach as many people as possible. The idea behind Sweet Siblings is to spread the knowledge that my brother and I have gained, having lived with diabetes and a sibling with diabetes for 11 years, to people that do not have access to this form of advice. Overall, there has been a positive response to young people learning of the existence of Sweet Siblings because we really fill a gap in the support system for young diabetics, which is the need for guidance from teens as opposed to simply from doctors or parents.
What kinds of questions have your peers come to you for so far? What are some of the most common concerns you guys hear?
Eliana: From younger kids, one of the most common questions we get is, “does this hurt?” My brother and I try to promote a positive attitude and we typically answer that although a pump or CGM insertion can hurt momentarily, it will improve your ability to control your diabetes and is 100% worth it. Another common question is “how do I explain diabetes to my friends?” We believe that friends can be a great support system and they need to know how to be able to help you. Therefore, the best approach to telling friends about diabetes is to explain it to them one-on-one and to clarify what they can do to help, such as how to identify a low and what to do in the case of an emergency. Friends are always there for you so it is important that they are informed about your diabetes.
The site you’ve put together is really visually appealing, with great information for young people on the blog and a growing presence on Pinterest, Twitter, and Facebook. Do you have plans to develop the site further? What do you hope it will be able to accomplish?
Eliana: We will continue to try and make ourselves available on more outlets. What we hope to do is use the online platform that we have built to continue reaching diabetics that are far away while also partnering with organizations like JDRF and DRI to use Sweet Siblings as a support for local diabetics or people in the larger organizations’ networks.
Do either of you attend any of the diabetes camps or conferences geared toward young people – particularly the ones like Children with Diabetes Friends for Life Conference or Riding on Insulin’s events that encourage siblings to come along, too? Or JDRF events? What has your experience been with those?
Eliana: Since the summer of 2014, I have been working at the Barton Day Camp at Mount Sinai hospital. I started out as a CIT and this past summer I worked as the counselor responsible for the youngest group of girls. I absolutely loved looking after these girls during the summer. I think that having diabetes in my family has equipped me with the proper instincts to be able to pass my knowledge on to others, which is what I am trying to achieve both by working at camp and through Sweet Siblings.
Additionally, my brother and I have attended the JDRF one EXPO for two years now. Our first year, we spoke on a panel alongside other amazing diabetics. This past year, we had a booth where we spoke to the people at the conference about Sweet Siblings and our goal. Being able to interact with people at the conference and spread the word about Sweet Siblings has been a great opportunity because it has allowed us to reach more children in need of guidance.
We’d love for our readers to know a little bit more about each of you. Mathias, has it been tough to navigate diabetes with your friends? Do you have to explain yourself a lot or do they get it? Has knowing your sister’s got your back been helpful at all? What kinds of activities do you participate in? What do you like to do?
Mathias: I have been very lucky with my friends and my diabetes. Because of the fact that I have been going to the same school since the age of four, I have been able to avoid having to explain my diabetes to my friends. But, recently since I have entered high school and have met a lot of new friends, I have noticed that people are curious and ask a lot of questions about the devices that are connected to me and what I am periodically doing. I have never been in a situation where I have been criticized or made fun of because of my diabetes, I only find that I sometimes need to have a little patience to explain it to people – they just want to learn.
Yes! My sister absolutely has my back. I know I can always trust her to help me in any situation I am in – whether I am running out of juice or having a low blood sugar and just asking her to keep me company until I feel better. She is always there for me!
I take part in many extracurricular activities such as Model UN, Debate and Mock Trial. I also enjoy College Bowl and Entrepreneurship club. During the summers I love to play golf. Having diabetes has sometimes made it difficult for me to participate in overnight activities but as I am getting older, I am working through those challenges and taking part in everything! It just requires a little more planning and vigilance.
Eliana, I think most people find your involvement and support of your brother truly impressive. You both clearly have an entrepreneurial spirit and an understanding of how we do better when we have somebody to walk a path with us. Do you worry about your brother a lot? Do you think that’s true of most “sweet siblings?” What helps settle your worries? And what are your interests? Your aspirations?
Eliana: Thank you. I think that my brother and I have always been a team. We are close in age and we support one another in school and outside of school. It is a very natural instinct for me to worry about my brother. He is very responsible and good at managing his diabetes but yes, I do get worried occasionally. I do hope that other siblings support one another and part of what we are trying to accomplish with Sweet Siblings is to inspire that sense of responsibility, not only in the sibling with diabetes but in their brother or sister as well. I would say that technological advances have helped settle my family’s worries. My brother has been on the pump since months after his diagnosis and the Dexcom has been extremely helpful and reassuring as he is becoming more independent as a young adult. This is why we update the Sweet Siblings blog with technology posts and new research breakthroughs. Although we are aware that not every family has access to these resources, we feel that much can be done to ensure that health care covers these devices because they are crucial for diabetics.
In terms of my own interests, I am the captain of my school’s Debate team. I am also an editor of the school paper and a member of the Model UN team. I recently travelled to Boston on a Model UN trip with my brother, where he managed his diabetes very elegantly, with a few check-ins and reminders from his older sister. In the future, I hope to combine my interest in public policy and debate to be an active advocate for the diabetes community.
Eliana and Mathias, you’ve helped many kids and their families already. We can’t wait to see what you do next. There is nothing more heartening than seeing the rise of a generation of advocates that will take our causes to the next level and there is something exceptionally sweet about siblings who work together to make it happen.