Danielle Steppat is a friendly face around many JDRF events. You’ve probably seen her warm smile or have been drawn into a conversation because of her outgoing personality. Behind-the-scenes, she’s also an outreach volunteer extraordinaire and acts as volunteer lead of the T1D Connections Program. So many newly diagnosed families and adults have made meaningful connections with others because of the hard work Danielle has put in to help make this program what it is today. She tells us what motivates her to be a diligent T1D mom, OV, and friend everyday.

 

What is your T1D story?

My connection to JDRF and T1D is my fourteen year old son, Christopher.  He is currently a freshman in high school.  He was diagnosed when he was ten years old on July 19^th, 2015.  In the months prior to his diagnosis, he was complaining of headaches so I told his pediatrician at his annual well check-up.  His doctor ran some routine bloodwork and everything came back normal except that his fasting blood sugar came back very slightly elevated at 105.  The doctor told me to keep an eye on it and use my dad’s glucometer to test his blood sugar the next time he spent the night there.  Fast forward to July, which was the first time that he spent the night at my parents’ house.  I had been noticing that he was drinking more than normal and complaining of being really thirsty in the week prior.  I also noticed that he was waking up in the middle of the night to use the bathroom which was not something that he usually did.  I just attributed these things to the fact that it was a really hot week in the middle of July with temperatures in the 90s and he was also in a week long taekwondo camp. I shrugged off the obvious symptoms that I was observing.  When I dropped Chris off at my parents’ house, I told them to test his blood sugar in the morning when he woke up before he ate or drank anything.  My mom called me that morning to tell me that she tested him multiple times that morning and all of the readings were around 300.  I knew deep down what this meant and that our lives would never be the same.  When we got to Jersey Shore University Medical Center, we were ushered right into the pediatric emergency room and that was where Chris was given his first injection of insulin and we were given the news that he did in fact have Type One Diabetes.  After his hospital admission, the next two days in his hospital room were a revolving door of doctors, nurses, social workers, child life specialists, dieticians and family members.  It was all a blur.  I left the hospital feeling like I had the weight of the world on my shoulders.  It was like I was leaving the hospital with a newborn baby again, except this time I had this whole entire new added responsibility to keep him safe and alive all while fighting against a disease that wanted to take him away from me at any given moment.  I vowed in that moment that I would do whatever I needed to do to keep him safe, happy and healthy and help him thrive despite his new diagnosis.  Since that day, I have realized that the situation is not as dire as I made it out to be that day.  I have learned so much about the day to day management of Type One Diabetes that was gained through experience.  On that day leaving the hospital, I was frozen in my fear and thought the worst.  The way I overcame that fear was vowing to get involved and be an active participant in helping him find his voice and by helping others escape that initial fear that we have all experienced.  Helping Chris find his voice and providing support to other newly diagnosed families has been the best antidote to that initial fear and anxiety that I could have ever imagined.

 

How did you get connected to JDRF?

During Chris’s first day in the hospital, after we all heard the diagnosis of Type One Diabetes, we gave him the choice of how he wanted to move forward.  We asked him if he wanted to keep his disease quiet and lay low or if he wanted to use what happened to him to help other people in the same boat as him.  Without hesitation, his little ten year old face looked up at us and said, “I want to be able to help other people.”  After Chris and my husband went to sleep in the hospital that first night, I stayed awake and looked up how to get resources and support for Chris in his new diagnosis and his new life.  All of my google searches kept going to JDRF.  Before we left the hospital on that second day, we were signed up for our first JDRF One Walk at the Jersey Shore and “Chris’s Crusaders” were born.  Little did I know at the time, just how much my life, Chris’s life and our overall family’s life was going to change for the positive.

 

You just did your 5^th walk- Why is the JDRF One Walk so important to your family?

Walk is so important to our family because we do raise money with our walk team, “Chris’s Crusaders.”  The money raised goes directly to funding research to find better treatments and technologies for Chris and all others living with Type One Diabetes.  The ultimate goal of the One Walk is to one day find a cure.  These discoveries and better technology will without question make Chris’s life better and more manageable.  This in turn will make our family life better because it will eliminate the 24/7/365 management of the disease that is always on our minds.  Better technologies will make Chris’s life easier and more seamless.  As technologies and treatments improve, the amount of intervention will decrease and treatments will mirror what normal beta cells and a normal pancreas do.

The most important part of walk for me is seeing Chris’s reaction each and every year.  I’ll never forget his face during that first walk in 2015, when he was able to see other kids who were just like him.  He saw them wearing their CGMs, their insulin pumps, giving themselves insulin injections and pricking their fingers.  He saw that he was not alone.  Even though he is a teenager, he still feels the excitement of the day.  It is a day in which he is physically able to see all of the people who love him, support him and stand behind him each and every day.  Some are there in person, walking with us.  Others are there is spirit and still others show their support by donating.  The walk is always the culmination of another year of living with and beating Type One Diabetes.  It is another year in the fight to turn Type One Into Type None.  We also always have a barbecue after the walk as our family’s way of saying thank you to all of the people who have supported Chris during the past year.

Our major walk fundraiser for the year is our annual fundraiser at a local restaurant and ice cream parlor.  “Jersey Freeze” in Freehold, NJ graciously allows us to host “Chris’s Crusaders” night the week of Chris’s diaversary every year.  They generously donate 20% of the profits of the day’s sales when customers mention our team name.  In addition to it being a fundraiser, it is also a celebration of Chris’s diaversary, another year of kicking T1D in the butt.  The 2019 “Chris’ Crusaders” day at Jersey Freeze even had some distinguished guests.  These guests included members of the Freehold Boro Council, NJ Assemblyman, Eric Houghtaling and NJ State Senator, Vin Gopal.  Senator Gopal presented Chris with a State Citation in recognition of his fundraising efforts and also his work as a JDRF Youth Ambassador.  This was a huge honor for him and something that our family was very proud of.  It was a proud mommy moment for me.

Chris also had the honor to be the JDRF Jersey Shore One Walk’s kickoff Speaker this year.  This was so incredibly special to him.  He has spent the past year in the JDRF Youth Ambassador Program finding his voice and becoming more confident in speaking to larger crowds of people about his life living with Type One Diabetes.  The speech was the culmination of his year of extreme growth and maturity.  Another tremendous source of pride for me was seeing just how proud he was.  This was another proud mommy moment for me!

 

Why did you get involved in JDRF?

I got involved in JDRF because I know from experience that having a community that “gets you” helps tremendously in being able to cope and thrive when something is thrown at you that is life-changing.  Type One Diabetes is so often invisible to most people because so much of the management is done quietly and behind closed doors.  It is not as easy to see as some other diseases or disabilities.  Initially, JDRF was supposed to be for Chris since he is the one with T1D.  Very quickly, I realized just how much it meant to me and our whole entire family.  It provided a “family” of other T1D families (moms, dads, brothers and sisters) who just get it without it having to be explained.  The other T1D families that we have met have become our second family and some of our best friends.  It is the silver lining of the T1D diagnosis.

 

What made you stay involved with JDRF?

I decided to stay involved with JDRF and take on a lead volunteer role because I have experienced firsthand how beneficial the support of a community has been in our family’s overall view of living with T1D.  At first, I was surprised at how much of a support system it was for our entire family and not just Chris.  We have met so many amazing and supportive people in our four and a half years since Chris’s diagnosis.  We have also gotten to experience some pretty amazing things through JDRF.  Seeing how much we have learned from others in the T1D community has given me the perspective to be able to know that I wanted to pay it forward.  I know that there are people that I can text or call at any time to answer a question that I may have on any given day.  I have JDRF to thank for that.  I love having a community that is so willing to offer each other advice or help, no questions asked.  It took a diagnosis that so easily could have given us a bleak and isolated outlook, but instead because of the support that we experienced, we have been able to maintain a mostly positive outlook on the future of life while living with Type One Diabetes.

 

How has JDRF impacted your life?

JDRF came into our life at exactly the right time.  We have realized through experience how important it is to hear real life experiences and advice from more “veteran” T1D families when you are newly diagnosed and just starting your T1D journey.  It has given us a community, a second family and some amazing friends.  Our T1D family has become a valuable resource in our local T1D community because it has provided a safe place for other T1D families to share and understand the day to day of living with this disease with people who truly get it.  It is often times hard to share so many experiences with other family and friends because they don’t live with T1D each and every day.

JDRF has also been so beneficial our family because it has given Chris and outlet to feel like he has the power to have control over his T1D by getting involved.  JDRF has given Chris the  opportunity to find his voice specifically through the Youth Ambassador Program and community meet ups. He was always a quiet kid but has really come out of his shell in the three years that he has been a Youth Ambassador.  He has dressed up as Rufus (the JDRF mascot), has spoken to state and federal law makers and he also loves connecting with newly diagnosed kids and being able to share experiences with them.  He has found so much confidence in himself because of JDRF.  He used to hate speaking in public in front of people and now he loves sharing his story of living with Type One Diabetes.  He has spoken in front of small groups (Plymouth Rock Assurance employees during the Lunch & Learn program) and large (the Jersey Shore One Walk kickoff speaker).  He was even asked by his middle school principal to present a TedTalk for a TedX event in our town’s school district.  The TedTalk was titled “From Diagnosis to Action.”  He shared about how he turned his T1D diagnosis from a negative to a positive by becoming active in JDRF and the Type One Diabetes Community.

 

You are currently the Chapter’s T1D Connections Lead Partner where you help oversee mentoring of newly diagnosed parents and adults. What is the T1D Connections Program? What made you want to take on this important role?

The T1D Connections program helps me connect with other newly diagnosed families and adults and offer support in some of their hardest times. Its an incredibly meaningful role to fulfill where I and other outreach volunteers are able to offer emotional support and guidance while also connecting them to the great resources JDRF is able to provide. In our chapter alone (JDRF NJ Metro and Rockland Chapter), we are currently supporting 115 newly diagnosed individuals and/or families.  That number continues to grow.  We also currently have over 30 trained amazing and dedicated Outreach Volunteers that I am so extremely lucky to lead and mentor.

When presented with this opportunity, I was so excited to take it on because I have seen what the T1D community has done for us through JDRF. I wanted to be able to provide that to other newly diagnosed families and help mentor other outreach volunteers in their roles.  I see how people come together to help each other.  They want to share their experiences and offer and receive advice and assurance that they really are not alone.  We all crave that interaction because we know just how important and beneficial that is for us.  The initial contact is usually for their child with T1D, but the parents quickly wind up realizing just how important it is for them as well.  They value the guidance and advice that they get from others going through the same exact situations.  We are able to experience the “highs and lows” together, both literally and figuratively.  I have experienced first-hand what that connection can do.

What advice have you given to those that are newly diagnosed?

My biggest piece of advice to those that are newly diagnosed is to get involved.  Even if your child doesn’t want to get involved or have anything to do with JDRF or anything T1D related, it’s totally ok for you to get involved initially without them.  We have even had parents tell their kids with T1D that they as parents need to get involved for their own emotional well being.  This is even sometimes enough to give their kids that extra little push to get involved.  The kids with T1D get involved and are pleasantly surprised at how much fun they have after that initial hesitation.  Getting involved is about wanting and getting that sense of community.  It winds up being an emotional benefit for the entire family.  Surround yourself with other people in your situation.  Even though it is so easy to do, don’t isolate yourself and allow yourself to feel alone.  JDRF has so many resources to offer to everyone, regardless of where you are in the T1D journey.

What does a cure mean to you?

To me a cure means a whole new life.  It is just like any other milestone in someone’s life whether it be a new baby, a wedding, a retirement.  It is a new beginning.  A life for us with no more 24/7/365 thinking about and making decisions based on Type One Diabetes.  That always unwanted invisible visitor in our life who wants to be in charge.  It means a life free from finger sticks and insulin injections and insulin pump and CGM site changes.  It means no more carb counting and accounting for everything that potentially could affect blood sugar levels.  It means no more sleep lost due to treating high and low blood sugars.  It means no more tears trying to explain why this happened to Chris even though he did nothing to cause it.  It means no more fear of DKA caused by high blood sugar and no more fear of having to give a glucagon injection because of an extremely low blood sugar.  It means no more worrying about the cost of the ridiculous amount of diabetes supplies that are required to keep Chris alive.  It means no more hours and hours of time spent on the phone with insurance companies who refuse to cover medications and devices needed to manage type one diabetes.  It means that we have achieved our goal and won in our unending fight to “Turn Type One into Type None.”

 

The T1D Connections Program is a resource available to the T1D community that connects individuals to others who understand what it is like to live with T1D.  Through these connections JDRF volunteers provide emotional support and guidance while also helping families and individuals to become acquainted with JDRF in a meaningful way. If you are in need of support or just someone to talk to, JDRF will pair you with an outreach volunteer who knows what you are going through.

If you want to become an outreach volunteer and participate in the T1D Connections Program, contact Shannon Dutton, Outreach Manager.