Happy Rare Disease Day! And happy Henry’s IEP meeting day 🙂 Rare disease day is a day to honor and celebrate individuals living with rare diseases and to raise awareness about different rare diseases and syndromes. I totally forgot to prepare for it this year! In years past, I have made kind of a big… Continue reading Happy Rare Disease and IEP Day
Calvin’s diagnosis of 22q was a big surprise to us. Henry’s diagnosis of Dup15q was bigger than a big surprise – it was a total shock. But this past January, Henry recieved another diagnosis and this time it was one that we did see coming. By far most individuals with Dup15q syndrome are also diagnosed… Continue reading A Diagnosis We Were Ready For
This year, since we are out here on the east coast, we had the opportunity to go to the first Dup15q Believe Walk held in Atlanta! It was an awesome way to meet other Dup15q individuals and families and to show our love and support for them while also helping raise funds for research. The… Continue reading Dup15q Believe Walk 2016
We have been spending time with grandparents and cousins, getting lots of sun, having lots of fun, and very much enjoying our summer. In my own effort to relax as much as possible I have been letting the blog go by the wayside a bit, but here I am, doing a little summer catch-up starting… Continue reading Happy Happy Henry Day!
Disclaimer: This post contains Amazon affiliate links and I may receive a small compensation for providing links to Amazon products. My little Super Duper Henry is almost 3 years old and seeming more and more like a big kid every minute! I call him a “Super Duper” because he was born with Dup15q Syndrome –… Continue reading How’s Henry? A Little Update on our Super “Duper”
It’s the 15th! On the 15th of each month I try to do some kind of awareness post about Henry’s syndrome: Dup15q. It’s a rare genetic disorder characterized by an extra piece of the 15th chromosome. Here are some of my other Dup15q posts: Rare Disease Day: Get to Know 22q and Dup15q Henry’s Dup15q… Continue reading 15 Super Special Things About my Son with Dup15q Syndrome
I’ve shared about how my second son’s diagnosis of Dup15q syndrome was difficult for me, and the things I wish I’d known in those early days of coping with such surprising news about my baby boy. One of the things that was, and still is, difficult about being a parent of a kid with a rare… Continue reading How Instagram Helped Me Embrace My Son’s Diagnosis