VBGIVESBACK: Claudine DeNiro
Now a Council Member for Beyond Type 1, Claudine shares her and Ella’s story in our Q&A below.
And, we’re excited to kick off 2016 by supporting Beyond Type 1 as part of our ongoing #VBGIVESBACK program, and will be donating $10 of every VeronicaBeard.com order in January to the cause.
Show now to support Beyond Type 1
How did you first learn that your daughter had Type 1 diabetes?January 24th, 2015 - That’s a date I will never forget as it changed all of our lives forever. Ella had been experiencing all the classic symptoms of Type 1 diabetes and despite numerous doctor visits, she had never been diagnosed. We made a simple excuse for everything she was experiencing: for example, she was eatings so much and grew taller, but lost weight - so I thought she was thinning out from her toddler years. She was exhausted - and so I thought she was just tired from a full day in school. She was drinking so much water, which I was actually happy about. She wet the bed and was going to the bathroom all the time but I innocently thought that was from all the water! All the signs were right there and I had no idea. Someone dropped a faint hint of what it could all be from… After googling the symptoms for Type 1 diabetes, I called the doctor and a simple finger prick revealed a blood sugar of 800. (the norm is 80-100). At the same time, we found out she has Celiac, also an auto-immune disease, and she could no longer have any gluten. Double whammy… I had no idea what we were in for.
Once you had the diagnosis, how quickly were you able to make Gabriela feel a bit better?Within a few weeks on insulin, Ella was ready to play with her friends again. It was a joy to see that happen. She was doing great. But I was left crushed on the inside. Children are so resilient. She went back to school within 3 weeks and wanted to show all her friends how she can check her own blood sugar and take a shot. She is the bravest little girl I know and I want her to feel proud and strong and not ashamed of anything.
How were you first introduced to Beyond Type 1?One of the first people we met was chef Sam Talbot - I had reached out to him initially because I wanted to find someone in NY to help me understand the relationship between food and Type 1. Amazingly, he dropped everything and came right over to help us. He was just finalizing plans with his co-founders (Silicon Valley venture capitalist Juliet de Baubigny, philanthropist Sarah Lucas and rock star Nick Jonas) to launch Beyond Type 1-so we jumped right on board too, and I am proud to serve on the Council.
What is the primary mission of the organization?At our core, we are here to educate, advocate and support the path to the cure. By providing education, support and resources, Beyond Type 1 will bridge the gap from diagnosis to cure, allowing people to live well today while funding research for a better tomorrow. We are a new brand of philanthropy-leveraging social media and technology, to build a powerful community.
How do you pay forward the support you have been given by other moms battling Type 1 diabetes with their own children?Being a part of Beyond Type 1 has opened my eyes to the vital role “community,” especially an online community, can play when you are faced with a chronic disease. For me, having other people who understand what we are going through, to help us when we are struggling and celebrate with when things are going well-this has made our path so much better. In turn, I am there to provide that sense of community to others-by sharing information, resources, or just a reassuring, “Hang in there.”
What do you feel has been your biggest hurdle in this daily battle?The biggest hurdle is not knowing what will happen next. This disease is manageable but it’s an art not a science. We can do the same thing 5 days in a row and have a different outcome in 3 of those days. That’s really hard to do, every day. Also, trying to explain to people that Type 1 is not the same as Type 2. People just don’t get it and it hurts when they tell me that if I din’t give her sugar or juice or sweets and she could get better.
What is the most surprising information you can share about this disease?Type 1 diabetes is not a lifestyle disease-it is an autoimmune disease and it is a constant battle, 24/7. It’s not contagious or something Ella will outgrow, it’s not something that was caused by too much sugar and she could not live more than a few days without insulin. Type 1 diabetes affects both children and adults and in the US, 200 more people are diagnosed every day.
January marks the 1 year anniversary of Gabriela’s diagnosis, what do you think has changed the most for you?As everyone told me - we settled into our new normal. I didn’t believe that could ever be possible. I also would never have expected to have such a wonderful set of new friends. Friends who are so supportive and will do just about anything for us, including bringing diabetes supplies over at 2am because we ran out. It has been magical.
What are some of your proudest moments in the past year?Ella’s paraprofessional, who sits with her at school, told me a little boy asked her why she has diabetes and her answer was simply, “God just made me that way, and I still can do anything you can, just sometimes a little different.” Another proudest moment has got to be last summer when Ella spoke in front of 400 people, telling them she has diabetes and her “pan-cw-eas” doesn’t work,and asking them to help find a cure.
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