Hi! I’m Charne, mom to our precious little girl, Eva. Eva was diagnosed when she was 2 years old with Type 1 Diabetes – a rare, challenging and currently incurable disease. In this blog, I share my experiences, tips, challenges, research and most importantly tools on how to arm and equip us as parents (the Gatekeepers) to our incredibly brave children living with Type 1 Diabetes (the Warriors).
I am not a doctor disclaimer
These articles are in my own words using facts and research I’ve gathered from professionals and doctor’s. I am not a doctor, psychologist, pediatrician or pediatric endocrinologist nor do I pretend to be. I am a mother to a Type 1 Diabetic girl, seeking the best treatment and understanding to this disease with a positive approach. As a family, we’ve accepted this disease as reality and have decided to not allow it to bring us down or control our lives.
How did we know when it happened
We were on holiday in Mauritius. We were having a blast. Warm weather, plenty of swimming, great food and good quality family time. Eva was still in nappies and in the last week of our holiday I noticed we were changing them more than usual. She was also drinking a whole lot more. Juice or soft drinks never appealed to me, so Eva’s only fluids was water and Rooibos tea. There were no other symptoms until our return back home to Cape Town. On the 29th January to be exact, Eva suddenly started acting unlike herself. She was slow and wanted to sleep. I immediately made an appointment with our family GP. By this time, Eva had also developed a considerable nappy rash-something she wasn’t usually prone to. I mentioned all these concerns to our doctor and he suspected diabetes, but that we would need to take her for some blood tests to confirm. I knew very little about diabetes, let alone Type 1 Diabetes. So we took her for the tests, but the results weren’t immediate. There was nothing left to do but go home and wait. At the time, I was working full time, so I decided to take the rest of the day off to be with her.
The 30th January 2017
Eva was extremely lethargic, pale and talking gibberish. I ended up putting her in bed with me and to say that I was concerned is an understatement. No mother likes to see their child out of character. The doctor called early that afternoon and said that I “need to get Eva to the hospital immediately”. Our doctor is a calm, level headed man, so when I heard his urgent tone over the phone, I needed no encouragement to pick her up, strap her in the car seat and proceed to drive 160km/h up the freeway to the hospital. I called my husband, Andrew and updated him with the news. He left work immediately to meet me there. I literally parked the car just outside the reception area, left the car running, grabbed Eva (who was almost unconscious by this stage) and carried her up to the Pediatric Trauma unit. The nurses, made aware by our doctor, immediately took her blood sugar reading, which was 39.5mmol/L, confirming that she was in Diabetic Ketoacidosis (DKA). DKA is a buildup of acids in your blood. It can happen when your blood sugar is too high for too long and is life-threatening.
We spent the next 2.5 weeks in that ward. We were trained on the basics on Type 1. We had a Diabetic dietician visit us and teach us what foods to stay away from and which ones were good to eat. We had training from medical reps-teaching us about Continuous Glucose Monitors (CGM’s) and how to manage her sugar levels. Eva’s incredible Pediatrician, who officially diagnosed Eva, visited us everyday, even on his off-days, giving us little tit-bits of information and teaching us the foundations.
The great depression
Yes I became depressed. I asked myself all those questions we all have asked. Why her? Why my innocent baby? Did I do something in my past life to deserve this? She’s so young to have this disease! According to the IDF Diabetes Atlas, there are almost 500,000 children under the age of 15 years with type 1 diabetes in the world, the largest numbers being in Europe (129,000) and North America (108,700). So yes, its a rare disease to have at the age of 2. So, one couldn’t help but feeling somehow responsible. I blamed myself. My pin prick of knowledge on the disease at the time lead me to believe that I was responsible. Eva’s pead told us that it was an auto immune disease. Meaning 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 (what many people unfortunately think today and frustrates most Gatekeepers). He told us that she was actually born with it but it was just laying dormant all this time until it was ‘activated’. Scientists think type 1 diabetes 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.
A positive approach
Type 1 Diabetes is a chronic disease that affects our lives every single day. 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 arrogance 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: “Its no fun getting diabetes, but you must be able to have fun even if you have it”. The result – Eva lives a truly enriched life. You could almost say, we over-compensate for it by taking her outdoors, 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.
Fast forward to now. It’s been a journey of highs and lows (yes we can all say that in the literal sense), extensive learning, failing, succeeding but most of all, absorbing how such a little person can embody such incredible courage, positivity and strength.
We’re in this together. No, really.
This is not just Eva’s story. We all 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. Whether your child is on a CGM, a pump, or you’re self-monitoring; if your child has TD1, then you are welcome to feel at home in this forum. And hopefully I’ll meet you in person over a coffee soon ❣️
Thanks for reading. Remember we’re all in this together. Without community, we’re alone. And managing this condition alone is very challenging and lonely! Please feel free to browse my blog for other articles and if there’s any topic you’d like to know more about-do let me know and I’ll try to feature it in my next post! You can also find me on Facebook and Instagram. Or simply subscribe below and keep up to date with my latest discoveries on this condition 🙂