In Loving Memory of Charly Curtis

2012 – 2019

Charly Curtis was born on October 14th, 2012 as the youngest child to myself (Heidi) and David Curtis. Charly has 4 sisters and 2 brothers who all love her and miss her very much. I use the present tense because even though we lost Charly on Feb 7th of this year, the amount of love this entire family has for her has never wavered. Charly was born with Dup15q (isodicentric 15). Her life was full of milestones that we were afraid she would never reach. She was nowhere near a typical child in developmental speed, but her triumphs were enough for us all to cheer her on always. Charly enjoyed playing outside as much as she possibly could, preferably in the water! She jumped countless hours on trampolines, sang every song from the movie Frozen, and enjoyed a good old cup of coffee in the mornings. Unfortunately one of the common characteristics of Dup15q is epilepsy. Charly had suffered from small seizures for a few years but they were well controlled until January of this year. Then the seizures suddenly intensified very quickly. Despite her neurologist’s changes with medications, the seizures did not let up. Sometime during the early morning hours of February 7th 2019, she went into back-to-back seizures that stopped her heart. By the time I found her it was too late. We decided to donate part of her brain to Autism Brain Net for research. It is our hope that she will somehow help another child live a better life.  

In her short 6 years here with us she taught us many things. Most of all to always be patient and know that each day is a new day and a new chance to try again at what we couldn’t do yesterday. Charly showed her siblings what the meaning of unconditional love is. They have learned over the years to defend other kids with special needs because they know how much it can hurt someone’s feelings or self-esteem. She taught myself and her father that no matter how many times you get knocked down you will find a way to find the strength to get up and keep trying because that is what she needed us to do. She touched the lives of all who met her with her bright smile and contagious laugh.

Although Charly is gone from our arms, she will never be far from our hearts. There has not been a day gone by that she is not on our minds and dearly missed. We will forever wonder how much she could have learned if she were to still be here with us. The one thing we do know without a doubt is that we could not have possibly loved her more.

Heidi Curtis