DYF Camp Changed My T1D Kiddo’s Life


Camp empowered my daughter to make her first decision about her diabetes care at 6 years old.

Did you know that there are camps designed especially for people with type 1 diabetes (T1Ds) and their families? These weekend long camps are for kids to be outdoors and have fun while the adults who care for them have the time to indulge in some socializing and diabetes education, comforted by the knowledge that the children are with camp counsellors who are either T1Ds themselves or are experienced in caring for a T1D. Well we didn’t know these existed, that is, until we moved to The Bay Area from the UK a few years ago.

At one of our first endo meetings at UCSF we were told about the family camps that the Diabetes Youth Families (DYF) offers. We decided to give it a go, being new to the area, it felt like a good way to jump in and meet people. I went straight to the DYF website to sign up. They offer reduced prices and even free places to ensure that all T1Ds and their families can afford to go to camp. So, on a damp Friday afternoon in October we headed off to Camp Jones Gulch, a YMCA camp in San Mateo county.

My daughter was diagnosed at the tender age of 15 months. We started with insulin shots as everyone does (does everyone?) and continued for many years. Every time we started to discuss transitioning onto the pump I would feel a huge wave of anxiety and panic and would ultimately decide that ‘we’ weren’t ready and that we were fine continuing the way we were.

I often questioned myself why I felt so scared of the pump and all I can say is that I couldn’t get past the thought of seeing her with it on. It made me want to cry, having something (permanently) attached to my daughter. It would be visible to the outside world and people would see it and feel sorry for my her, like she was ill and in pain or something or worse was going to die. I obviously had some lingering issues from her diagnosis that were completely influencing the way I felt. I concluded that it should be something that my daughter decides to do for herself when she is older and more involved in managing her care. So it was pushed to the bottom of the to-do list.

And then we went to camp …

At camp the children (T1Ds and their siblings) are grouped together by age, all having outdoor fun from morning all day long until they are back together toasting smores around the fire in the evening. During this time the camp counsellors are taking good care of them and subtly working with the children on any areas that you noted in a survey that needed some focus.

I heard it said so many times that camp really has a positive impact on all the children living with T1D because, for once, they are not ‘the only one’. They are surrounded by children just like them, checking blood glucose levels, cleaning fingers, carb counting before meals, etc. and it suddenly feels like this isn’t so bad, in fact it’s pretty cool. You see them exchanging stories, showing off accessories or techniques for site changes or checking blood glucose levels (BGs) using different meters, but most of all you see them being kids and having fun.

During my daughter’s camp experience, she saw that so many of the other kids and counsellors were using a pump, and not just the same type of pump but a wide variety of shapes and sizes, places they were wearing them and fun features that they would talk about like being waterproof or having a square wave bolus (what ever that is). She became interested and asked me if she would have a pump soon.

I said, “If you would like one, then, yes of course you can.”

I asked if she would like to talk to a few of the kids to ask them about their pumps and why they chose that one and what they liked.

So there she sat, a 6-year-old little girl, asking a 15-year-old girl about her Omnipod and then a camp counsellor about her T-slim and she was sold. She wanted in on the action. I would like to have a pump please, Mummy, one of those that I can decorate with Sharpies and still be able to go swimming. That will be the Omnipod then. So the pump was placed at the very top of our to-do list.

Just as my daughter’s eyes had been opened to pumps and new ways of managing diabetes so had mine! I’ll never forget sitting in the dining hall at Jones Gulch on that first evening and experiencing the round circle meet and greet. Every adult introduced themselves in a very casual, friendly way, with a brief intro to their T1D and what, if anything, they were facing at the moment. Be that a new diagnosis and perhaps feeling overwhelmed or several years into diagnosis and encountering the teenage years. Whatever the situation you were in yourself, there were plenty of people all looking back at you with those eyes ‘I totally get it’ and offering support or words of advise. Wow.

It dropped all the barriers we often feel as adults to be able to approach each other and discuss maybe sensitive issues without really knowing each other. Everyone left knowing the name of several people who unconditionally understood. Great icebreaker!

After years of being the ‘only ones’ we were suddenly surrounded by this huge community of people who had all chosen to come together to learn and support each other. The rest of the weekend continued in the same fashion, plenty of guest speakers attended, all providing valuable insights into the latest research, medical devices and tips and tricks, all to be absorbed and discussed in a child-free environment, knowing they were close by in the best possible hands having fun.

It was a much needed time and space to indulge in the topic that normally no one wants to discuss with you, or they try to and then they soon switch off. Not at camp, that doesn’t happen. I personally found the whole weekend extremely healing and it helped me overcome some of the fears I had built up in my mind.

So we all came away from our first camp experience feeling recharged, reeducated, reconnected and ready to begin our pump journey!

After that first weekend at camp my 10-year-old non-T1D son actually said he wished he had diabetes! Why I asked? Because these kids are so cool—simple!

Thank you DYF! See you this weekend at Bearskin Meadows for next family camp.

Looking for an adult T1D camp? Sign up for Slipstream!

WRITTEN BY Sue Parkin, POSTED 03/08/18, UPDATED 10/22/22

Sue's husband and daughter are both with type 1 diabetes, so diabetes is an integrated part of her daily life. Her daughter was diagnosed when she was only 15 months old. The breadth and depth of Sue's diabetes experience saw enormous growth as the family embarked on a five-year adventure leading them to experience diabetes management in The UK, Japan and the USA. It has been a constant learning curve and challenge to understand not only how the local healthcare system operated, but how diabetes is managed from a cultural perspective. When Sue isn't working at Beyond Type 1, she enjoys being active with her kiddos, practicing reflexology (on friends with willing feet) and running outdoors to soak up the stunning San Francisco scenery.