Today we are reading the brave story of one truly inspiring mama! Charne is mom to beautiful 4 year old Eva who was diagnosed with Type 1 Diabetes at the young age of 2. Since that fateful day where they were informed of their daughters disease, Charne has made it her life’s mission to understand this disease better and live a happy, full and meaningful life despite the many challenges. She is a passionate about trying to help other moms in the same boat, and openly shares her journey over on her recently launched blog, Warriors and Gatekeepers.
This is her story.
Andrew and I will never forget that afternoon, where I rushed our precious 2yr old daughter, Eva to Kingsbury hospital, lethargic, pale and talking gibberish. The nurses confirmed upon our arrival that her sugar reading was 39.5mmol/L (normal is 4.7mmol/L) and that she was in Diabetic Ketoacidosis (DKA). (DKA is a buildup of acids (ketones) in your blood. It can happen when your blood sugar is too high for too long and is life-threatening.) “What does that mean?” we asked, “what can we do to make her better?”. Life is interesting this way. As parents, we’d do absolutely anything to erase any sickness or hurt our children have, we’d take it upon ourselves if we could, but not that day.
What is Type 1 Diabetes?
On the 30th January 2017, Eva was diagnosed with Type 1 Diabetes (TD1). An incurable and rare disease. TD1, in short, is a disease where the insulin-producing cells of the pancreas are destroyed by the body. Without insulin, glucose stays in the bloodstream, increasing the blood glucose level. Type 1 Diabetics are therefore, dependent on insulin. Only 500 000 children under the age of 15 are diagnosed with Type 1 Diabetes in the world. There is no cure for Type 1. Often, it has a blurred association with Type 2 Diabetes, which can be managed by taking non-insulin medication to increase the body’s sensitivity to insulin as well as diet and exercise.
Now being a parent is already a huge responsibility. And we were no exception to this. But adding another layer on top of this responsibility like this condition, was extremely overwhelming. Yes, I became depressed. I asked myself all those questions that pervade us in this type of situation. Why her? Why my innocent baby? She’s so young to have this disease! One couldn’t help but feel somehow responsible. I blamed myself. Eva’s pediatrician told us that it was an autoimmune disease which means that it wasn’t hereditary; she didn’t inherit it from someone in our family. He also said that she didn’t get it from eating sweets or too much sugar or any other lifestyle factors. He told us that she was actually born with it, but it was just lying dormant all this time until it was ‘activated’. Scientists think TD1 is caused by genes and environmental factors, such as viruses, that trigger the disease. But no one knows for sure and there is no cure. Yet.
Becoming Eva’s Gatekeeper
TD1 is a condition that affects our lives every single day. Before Eva was diagnosed, I was working full time in Advertising. After the diagnosis, Andrew and I made the decision for me to leave the ad world and dedicate myself full time to managing Eva’s condition, -a decision I never regret. We are blessed to be able to afford an incredible Continuous Glucose Monitoring system, called Dexcom that allows us to see what Eva’s levels are doing via a sensor that is placed in her arm. Her blood data is sent through to our mobile phones, so we’re able to act on whether she needs insulin (when her sugar level is going high) or when she requires glucose (when her reading is low). This observation of her levels is a 24/7 around-the-clock job. With some experience, getting to know her body and an incredible team of doctor’s, we’ve managed to learn how her body reacts to different foods and grasp her pancreas’s patterns, to a certain extent. For instance, at around 9pm -she tends to go high, irrespective of what she’s eaten at dinner, and at 2-3am-her levels start dropping, which means she needs to be woken up and given sugar. In the beginning it was difficult, hearing alarms going off late at night and waking her up, but it’s truly incredible how much she has adapted. Not once, have I heard Eva complain about her condition or reject her medical treatment. The courage and stamina of this little one is astounding.
Eva lives an enriched life. I made the decision early on in our journey, that there is nothing we can do to change this. We had a choice however. We could choose a life filled with anger, negativity, fear and ignorance or we could fully accept Type 1 into our lives and approach it with a positive attitude. Opening ourselves up to adapting with the condition and empowering ourselves with knowledge to make Eva’s life as easy as possible with this disease. As Prof Johnny Ludvigsson said: “It’s no fun getting diabetes, but you must be able to have fun even if you have it”. The result? Eva lives a truly full life. You could almost say, we over-compensate for it by taking her outdoors often, travelling as much as we can, laughing as much as we can -and that’s ok, because we all know life is so short and we all get dealt with a card, and this is ours.
Warriors & Gatekeepers
This is not just about Eva’s story. There are other parents and carers that share very similar inductions to this disease. I’ve found, to my surprise, that there is very little support for TD1 families in Cape Town, let alone South Africa. And instead of waiting for it to come to my inbox, I would like to reach out with open arms to parents and family members that are in search of support. Community is so important. We ALL need support, encouragement, tips or just someone that you know is going through the same thing. If your child has TD1, then you are welcome to reach out by visiting warriorsgatekeepers.com and you’ll find support and encouragement is closer than you think❣