KCNA2 RARE DZ DAY
February 28 is Rare Disease Day. KCNA2 Epilepsy Global Alliance welcomes you to show your support by donating to our organization, sharing your personal story, or using community hashtags on social media.
KCNA2 RARE DZ Day
The New Normay by Nancy Musarra, Ph.D

What do you do when told your child has a disability? Or when you notice something isn’t quite right? Disabilities do not discriminate. Anyone’s child can be born with or develop a medical or mental health condition. Anyone’s child can be involved in an accident, resulting in a lifetime of challenges. The color of your skin, level of your education or size of your bank account won’t make a difference. In The New Normal, psychologist Nancy Musarra shares her challenges and triumphs as a mother of a child with special needs. Having interviewed hundreds of people—from parents to caregivers—who have walked the same path, Dr. Nancy shares their stories and reflections. Collectively their wisdom forms the foundation of The Seven Things You Need to Know to be prepared for your journey. To learn more and purchase the book click here*.

The New Normal isn’t just a resource for people who have children with special needs. It’s a must-read for anyone who wants to live a full life.” –Beth and Tom Tupa, Veteran NFL Family.

*All net proceeds of The New Normal will go to KCNA2 Epilepsy Global Connection

SWAN2019 Conference – Renee Swannack (SWAN Parent) – Recorded: 19 October 2019

SWAN (Syndromes Without a Name) Australia has been an important part of the rare parenting journey for our Vice President Renee. She presented this emotional presentation at the 2019 SWAN Australia Conference at the Royal Children’s Hospital in Melbourne, Australia.
‘Genetic counsellors: the helpful, the not so helpful and the things they don’t tell you’.
Children with Special Needs
At the pyramids in Giza to start our eight day trip in Egypt, December 2017.

Beauty in the Unexpected: Our Life Abroad as Parents of a Child with Special Needs

My girlfriend (now wife), Oriana, and I left to teach abroad in our mid 20s with an itch for adventure and Spanish language acquisition. We landed at Westhill Institute in Mexico City where I taught special education and history, and Oriana taught elementary. As I think many international educators might say, a few years abroad quickly turned into many more. For many reasons, international teaching was, and is, contagious. Mexico City was followed by Escola Americana do Rio de Janeiro, and as our 20s turned to 30s, we found ourselves married and expecting a child. For us, having the child in Brazil was a no-brainer; it served as the ultimate embrace of our lives abroad. Plus, after over five years overseas, run-ins with medical care and insurance had not escaped us (i.e., that time I had emergency facial surgery in Mexico or Oriana got dengue in Brazil), so we weren’t intimidated. We found a great midwife, doctor and hospital to see us through a natural birth.

Read More.

Beauty in the Unexpected: Our Life Abroad as Parents of a Child with Special Needs

My girlfriend (now wife), Oriana, and I left to teach abroad in our mid 20s with an itch for adventure and Spanish language acquisition. We landed at Westhill Institute in Mexico City where I taught special education and history, and Oriana taught elementary. As I think many international educators might say, a few years abroad quickly turned into many more. For many reasons, international teaching was, and is, contagious. Mexico City was followed by Escola Americana do Rio de Janeiro, and as our 20s turned to 30s, we found ourselves married and expecting a child. For us, having the child in Brazil was a no-brainer; it served as the ultimate embrace of our lives abroad. Plus, after over five years overseas, run-ins with medical care and insurance had not escaped us (i.e., that time I had emergency facial surgery in Mexico or Oriana got dengue in Brazil), so we weren’t intimidated. We found a great midwife, doctor and hospital to see us through a natural birth.

Read More.

Children With Special Needs
At the pyramids in Giza to start our eight day trip in Egypt, December 2017.

In the News

HERKIMER N.Y. (WUTR) Dr. Nancy is not only a psychologist but also a mom of a child with special needs. She shares her experiences and advice with other parents/caregivers who also have children with special needs. Her book The New Normal: 7 Things to Know as You Care for & Love a Child with Special Needs can be purchased by visiting www.archerkimer.org see upcoming events for link.

Read More.

KCNA2 Therapy
Beautiful Rare Child

To Our Beautiful Rare Child

From the moment we knew you existed, we dreamed of all of the amazing opportunities that lay ahead of you. Your first steps, your first words, your first day of school, your first driving lesson, your first love…

We were like any other parents to be, naïve and innocent and dreaming of what kind of adult you would grow into, what treasures would await you…


When you were born you were a picture of perfection. You began having unusual but subtle symptoms and a team of pediatric neurologists couldn’t pinpoint a cause or explanation. Diagnoses were discussed and were quickly overlooked as test results came back negative. Like peeling back layers of an onion, I Googled your symptoms, poured over research documents and forums, searched for an answer, an explanation, a glimpse into your future, a cause, a cure…

To Our Beautiful Rare Child

From the moment we knew you existed, we dreamed of all of the amazing opportunities that lay ahead of you. Your first steps, your first words, your first day of school, your first driving lesson, your first love…

We were like any other parents to be, naïve and innocent and dreaming of what kind of adult you would grow into, what treasures would await you…


When you were born you were a picture of perfection. You began having unusual but subtle symptoms and a team of pediatric neurologists couldn’t pinpoint a cause or explanation. Diagnoses were discussed and were quickly overlooked as test results came back negative. Like peeling back layers of an onion, I Googled your symptoms, poured over research documents and forums, searched for an answer, an explanation, a glimpse into your future, a cause, a cure…

Beautiful Rare Child