Adventures in KAndylaND

7 Ways to Advocate and Support Friends and Family with a Rare Disease

7 Ways to Advocate and Support Friends and Family with a Rare Disease

I had a question from one of my friends today so I thought I would address it in a blog post. This person asked me, "What is the best way for me to...
Rare Disease Day 2023

Rare Disease Day 2023

Every year since 2008, Rare Disease Day is celebrated all around the world. Since February 29th is the "rarest day" on the calendar, it was chosen for that date. Most years, like this year, it is celebrated on February 28th instead. It was created by EURODIS and the Council of National Alliances to spread global awareness and bring rare diseases to the spotlight. I have been celebrating it for the last several years to bring the spotlight to my own kids' rare disease, Neonatal Diabetes.

August: Our Family's Diaversary Month

August: Our Family's Diaversary Month

For every parent, the birth of their child is a significant month. But for the parent of a child with a rare disease, or a significant diagnosis, the month of diagnosis is also a time that is forever remembered. For some, especially in the diabetes world, we call this our "Diaversary". August is always a hard month for us because both of our children were diagnosed with a rare form of diabetes that month. Neonatal Diabetes
Andy is a 12 year old with Neonatal Diabetes and DEND Syndrome.

11 Years With a Life Changing Diagnosis

Eleven years ago we were entering Brenner’s Children’s Hospital in North Carolina to become pioneers for a rare disease. While Andy was not the first patient in the United States to come off of insulin, he was definitely in the inaugural class (we think one of the first 5 at least). For 17 months, we kept him alive by… Continue reading

Closing the Gap: The First Two Weeks on Carbamazepine

We are now at the end of the second week on Andy’s new medicine, Carbamazepine (Tegratol), and so far, we have had no adverse side effects.  We started him on a small dose of 2.5 ml (50 mg) twice per … Continue reading

Closing the Gap: Is Gene Therapy Our Future?

There are two thoughts that ran through my mind when our doctor told us that our son had a rare genetic mutation: Which one of us gave it to him (or was it both of us)? – and Why can’t … Continue reading

Closing the Gap: What the Research Says

Disclaimer:  The information shared in this post is in no way meant to be a diagnosis or treatment for you or your child’s condition.  Please know that our only intention is to share our story and help others see how … Continue reading

My Heart 

Can’t get over how big he’s gotten. Just wanted to share a little smile today. This is Andy how he usually is – smiling!  Missed the date but as of January 24th he has been off of insulin now (takes … Continue reading

Pretty Nails To Support Children with Disabilities

I knew I loved Jamberry nails long before I even tried them and long before I decided to sell them. Part of what I love about the company is that they are all about giving back to people in need. … Continue reading

Towers of Pillows

Anybody who has a child on the spectrum or with SPD probably took one peak at that title and shook their head in understanding.  “Yep, my kid does that too” you’re saying.  Sometimes I look at Andy and just think, … Continue reading

Katie’s New Diagnosis

This is an overdue post.  We’ve now been in the Cincinnati area for over a year and we have been slowly getting the kids settled into their new team of doctors at Cincinnati Children’s.  After meeting with the endocrinologist, neurologist … Continue reading