Our Vision
Our Mission is to raise awareness for Rett Syndrome while recognizing, honoring, and supporting special needs families. We want to make a tangible difference for the families in our community, while providing much needed scholarship assistance for special-needs siblings, the unsung heroes of the family. We aim to help ease the financial burden that medically complex families often face. We can not achieve our goals, without your help.
My Story
By: Calan Burns
Special Needs Siblings have a unique perspective on life, and what family means to them. Our lives have been changed and challenged in many ways. We have been robbed of so many things from climbing trees to late-night giggles and someday retelling the stories of our childhood with our built-in best friend. We take nothing for granted and love fiercely.
My sister Sophia has Rett Syndrome. I am her best friend, and she is my biggest cheerleader. As I have gotten older and bigger, Sophia remains small but mighty. Her needs only becoming more complex. I have watched my sister suffer, and watch our parents worry. I want to help her, to fix everything, and ease my family’s worries, but I can’t. Sophia is very medically complex. She has spent countless nights in the hospital and has had hundreds of doctor appointments through the years. Nothing in my family is "typical", yet I have had to learn to adjust and live in a typical world. School settings, family outings, and even family pictures differ from my classmates. My stress is different from my peers. I was often faced with very ‘grown up’ situations, while still only having the coping skills of a child. As a Rett Sibling I often faded into the background and joined in as a part of her care and support system. My childhood has been very different from the stress of medical issues and the challenges and trauma that comes with Sophia’s diagnosis. Some siblings embrace these challenges, while others resent them… While there are services and therapies to help cope with Rett, there are very few resources for the siblings.
A diagnosis of Rett Syndrome does NOT affect only the child with Rett. It affects the ENTIRE family. It touches and changes families and communities in every town across the country. As a family, everyone sacrifices, suffers, and learns to cope.
We founded Twice Blessed Rett to help bring a little joy and margin to special-needs families, while supporting their siblings through scholarship assistance. We hope to enhance the quality of life for those living with with a diagnosed severe disability, while recognizing, honoring and supporting the unsung heroes in the family. The special needs siblings. The kids like me.
Thank you for helping us make a difference!
Calan Burns - 20 years old
Sophia Burns - Living with Rett Syndrome, 22 years old