Adventures in KAndylaND
7 Ways to Advocate and Support Friends and Family with a Rare Disease
by Christy Vacchio
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...
August: Our Family's Diaversary Month
by Christy Vacchio
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
11 Years With a Life Changing Diagnosis
by Christy Vacchio
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…
Closing the Gap: The First Two Weeks on Carbamazepine
by Christy
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 …
Closing the Gap: Is Gene Therapy Our Future?
by Christy
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 …
Spreading Awareness
by Christy
One of the problems of having a rare disease is that awareness does not spread very quickly. It surprises and saddens me that we are coming up on 10 years into a new treatment for about 90% of patients with …
Day #5 of D-Blog Week: Awesomeness
by Christy
Awesome things – Friday 5/13:In February the #dsma blog carnival challenged us to write about the most awesome thing we’d done DESPITE diabetes. Today let’s put a twist on that topic and focus on the good things diabetes has brought …
Hopes and Fears Pop Up in Dreams
by Christy
I know that dreams can have a lot of meaning and sometimes they are a little mysterious and hard to understand. Then at other times, what you dream is very straightforward and hits you in the face. Last night I …
Health Activist Writer’s Month Challenge – Day 1
by Christy
The people over at Wego Health have issued a challenge. Blog every day for the month of April on your condition. It can be difficult for us to sometimes come up with a topic, especially when things are going smoothly …
Developmental Ups and Downs
by Christy
We were dealt a blow yesterday. Katie is behind. When Andy was on insulin so many years ago, we knew he was behind. He wasn’t doing anything he should be doing right on track. As a parent, you always want the best for your child, but you also instinctively “know” when something is wrong.
Why I Blog
by Christy
One of the moms in the DOC (Diabetes Online Community), Dawn of Sugar Free Candyland, posted today about why she blogs. This idea came from one of her friends, Dawnmarie of Words from DUG. It’s interesting that this came up …
Cheers and Fears
by Christy
As I walked out the door with Andy this morning, I hesitantly let go of his hand. Just yesterday I was telling Dan how we had been practicing every morning with walking next to Mommy instead of holding my hand …
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