My daughter’s journey with Down Syndrome and Type 1 diabetes

Our world changed on June 2, 2015, at 9:28 p.m. when Charlotte Grace Keilty was born six weeks early in Weiden, Germany. Within a couple hours of Charlotte’s arrival, the doctors informed us that they believed Charlotte had Down Syndrome.

Although the official test took a week, she exhibited all of the physical traits, including a space between her big and second toe, a palmar crease on her hand, flattened facial profile and nose, and almond-shaped eyes.

Regardless of her diagnosis, we loved her more than anything and were excited to start our life as a family of three.

Despite what doctors warned us, Charlotte’s first few years were typical and very similar to her peers (other than the numerous therapies throughout the week). Until July 7, 2017, when Charlotte was diagnosed with Type 1 diabetes. 

We were on vacation in Georgia staying with Charlotte’s grandparents when she started to pee through diapers, drink a ton of water and seemed really sweaty and tired. Looking back, we now know she was exhibiting symptoms of diabetes at least a month prior to this!

After one visit to the pediatrician on a Friday afternoon where her blood sugar read HHH (High High High) on the meter, we were told to get in the car and head to the children’s hospital immediately, still in bathing suits and cover-ups from the beach.

Regardless of her diagnosis, we loved her more than anything and were excited to start our life as a family of three.

Within a few hours of arriving at the emergency room, we had a Type 1 diabetes diagnosis, learned what an A1C of 6.2 meant (fortunately, we caught it early), and had a slumber party in the hospital for the weekend. Not to mention — Charlotte’s sister Pippa was four months old at the time of our diagnosis and along for this crazy ride!

Let’s just say that raising a child with Type 1 is not anywhere near “typical.” When Charlotte was diagnosed with Down Syndrome, we thought that would be our biggest challenge as parents. However, Down Syndrome is a walk in the park compared to what comes with a Type 1 diabetes diagnosis.

Related: Are you prepared for a diabetes emergency?

While our life doesn’t revolve around diabetes, diabetes definitely plays a huge role 24 hours a day, 7 days a week, 365 days a year.

Because Charlotte was diagnosed at the age of 2 and is now only 4 years old, she has never been able to manage T1D on her own. As parents, it is our job to keep our kids alive, but that has a whole new meaning when your child has Type 1. If her blood sugar is too low, she can die. If her blood sugar is too high, she can die. We have to be on top of it all the time and can’t take a break from Type 1. In a way, as much as we hate to admit it, it rules our life.

However, with the latest and greatest technology, Type 1 diabetes is more manageable. One month after diagnosis, Charlotte started wearing a Continuous Glucose Monitor (CGM) which gives us real time blood sugar values via Bluetooth. This technology in itself is a LIFESAVER and allows us to know her blood sugar even while she is at school. A year after diagnosis, Charlotte got her first insulin pump and we have never looked back.

It is so inspiring to watch Charlotte overcome every obstacle in her path, even at only 4 years old.

Although Charlotte is only 4 and can’t manage her own diabetes (yet), she loves to help clean her finger with the alcohol swab and hold her meter up to the blood drop. She will even bring us her CGM receiver when she’s hungry to show us her blood sugar!

While we hope that Charlotte will be able to fully manage her own diabetes when she is older, we are confident that with the help of amazing doctors and continually advancing technology, Charlotte will do anything she sets her mind to. We are so thankful for the supportive staff at Baylor Scott & White McLane Children’s Medical Center who are by our side every step of this journey.

For those of you with Type 1 diabetes or loved ones of people with T1D, always remember:

1. Don’t be too hard on yourself. Not every day will be the same or perfect — and that is okay.
2. Find a good doctor. Having a doctor who has Type 1 diabetes was a game changer for us. Bottom line, find an endocrinologist you trust to help you walk through life with diabetes and all its hurdles.
3. Get involved! Join a local organization that supports diabetes research or find people in your community with Type 1 diabetes.We have been fortunate to meet lots of T1Ds in Austin and it has been the best thing to happen to our family.

Related: How to travel smart with diabetes

We love our Charlotte and are grateful for every day we get to spend with her. Parenting a child with multiple health conditions is many things — challenging, frustrating and exhausting, to name a few. But it is also so inspiring to watch Charlotte overcome every obstacle in her path, even at only 4 years old. We look forward to watching her grow and continue to amaze us all!

This story was written by Charlotte’s mother, Brittany Keilty.