Interview with our first Superhero

For anyone, no matter how big or small, being diagnosed with a diabetes is life changing. It means a massive change in lifestyle and simple pleasures that you once enjoyed at will, are no longer available to you. Birthday parties, sleep overs and school outings can be scary and challenging.

We at Allerygkids are so proud of our first real live Superhero, Lala. She has been super brave and we are so thankful to her and her family for joining our journey to bring awareness to the community and family members.

Well done on being and AllergyKid Superhero, continue being the Superhero and Superfriend you are xoxoxo

Lala was diagnosed as being diabetic in February 2016. We asked Lala and her mom, Lindie a few questions which we thought may help you through your initial diagnosis.

Questions for Lindie :

1.  What was your initial reaction to the news about your daughter being diagnosed as a Type 1 diabetic ?

Wow! Where does one start? Shock, Fear, Devastation, horror, disbelief (even though I suspected and knew it was Diabetes before proper diagnosis, I so desperately wanted it to be something “not chronic”). I wanted to fix it there and then, which obviously isn’t possible. I was not going to wait for a cure to be found in 10 years, I was going to get her onto a current trial wherever it was going to take us!

2.  What were your daughter’s symptoms that prompted you to have her tested?

My niece was diagnosed with Diabetes 10 years ago, I remembered that she drank a lot of water. I noticed that Lala was drinking more water than usual for 2 days. My husband told me not to worry as we were experiencing a heatwave in Joburg, but I just knew……

3.  Is there any history of diabetes in your family?

My sister’s daughter, Imke, was diagnosed 10 years ago when she was 9. I’ve always said that Lala and Imke are clones – they look exactly the same. Ironically, Lala was diagnosed at the same age! However, when she was diagnosed they considered Imke too far removed.

4.  Have you changed your daughter’s diet?

The day she was diagnosed we went “Low Carb”. No wheat, no sugar, no legumes, no milk etc etc

5.  How do you monitor your daughter’s levels?

Lala uses a continuous glucose monitor called a Dexcom G5. It is a small device that gets injected under her skin, it’s about the thickness of a hair. The Dexcom transmits her blood glucose level via Bluetooth to her phone and it gets downloaded and stored. We log into the Dexcom app and can see her real time BG levels at all times. The best part is that we get her BG levels uploaded to our Smart watches, so we can monitor her level on our wrists!

6.  Can you tell us about the trial that your daughter was a part of in Israel?

As I mentioned earlier, the first thing you want to do at diagnosis is to “fix it’. The day after Lala was diagnosed a stranger sent me a link on Facebook with the message “check this out”. It was about the trial that Prof Eli Lewis is running in Israel to find a cure for diabetes. I immediately sent him an email, but being the busy man Prof Lewis is, he never answered. Finally with the help of the Israeli Ambassador to South Africa and the Chancellor of the Ben Gurion University, Prof Lewis agreed to contact us and took her on as a case study. Prof Lewis uses a protein found in human blood plasma called “Alpha1-Antitrypsin”. Alpha1 slows the autoimmune response of the body attacking itself, thereby slowing the rate of destruction of the insulin producing Beta cells in the pancreas.

In 40% of the case studies the subjects respond to Alpha1, so it’s pretty much a gamble whether it will be successful for you or not. Lala received 12 weekly infusions and miraculously she responded. She started dropping injections and the amount of insulin required to maintain normal blood glucose levels. Lala has been off insulin injections for 2.5 months. She will require further infusions in the future, but every injection dropped is a huge success! It has to be noted that this is not a “cure”, but it prevents the disease from progressing.

7.  What advice would each of you give to a new parent of a diabetic child?

Phew…. I suppose I’ll tell them to give it time!  Time to process and time to get used to this being their new “normal”. Your life becomes a constant number game, sometimes you win and sometimes you have to play much harder.I was never interested in this game and I definitely didn’t want to join this team, but now that I’m on the team, I’ll give it my all and be the best at it that I can possibly be!

8.  Are there any mobile apps, support websites etc that you would recommend to other parents of children with diabetes?

I’m a member of a South African Facebook group called Kids Powered by Insulin, they give daily support and advice on any diabetic topic. I’m also a member of TYPEONEGRIT on Facebook, it’s an international diabetic support group for people following the Low Carb diet. I find this group very competitive and thus only go visit this site once a week!

Our Superhero – Lala :

1.  What grade are you in?

I’m in Grade 4

2.  How did you feel when you were diagnosed with diabetes?

I was sad because I was scared of the needles and the injections. At first the pricking of my finger was also very scary. I was very sad that I wont be able to eat sweets anymore.

3.  Did you know what diabetes was?

Only a little bit from my cousin.

4.  Was it difficult to adapt to your new diet?

Yes, I miss eating pizza, cake, macaroni and sushi.

5.   Do you play any sport?

Yes I do gymnastics, dancing and soccer and love swimming.

6.  How do you manage your diabetes while you are your sporting activities?

I monitor my levels on my watch using my Dexcom. I’m very lucky as my levels are very good since we’ve done the Israeli treatment.

We hope you enjoyed the interview. If you have any questions, please feel free to drop either myself or Chantal an email at bonnie@allergykids.co.za or Chantal@allergykids.co.za.

Yours in awareness