What happens when your child receives a diagnosis so rare that even the doctors have few answers?

For one mother in Jordan, that was just the beginning of a journey filled with uncertainty, determination, challenges, and hope.

In this heartfelt episode of The KCNA2 & Rare Epilepsy Podcast, Dr. Nancy Musarra welcomes Abeer Alshroof, mom to six-year-old Abdullah, who lives with KCNA2-related epilepsy.

From noticing unusual movements before Abdullah was even born to navigating seizures, developmental challenges, and a diagnosis with little available information, Abeer shares what it means to advocate for your child when the answers aren't easy to find.

She also opens up about Abdullah's feeding and communication challenges, their family's experiences navigating medical care, the joy of watching him develop friendships and grow closer to his little brother, and the life-changing moment they discovered a worldwide community of parents who truly understood their journey.

💜 This episode is about more than epilepsy. It's about trusting your instincts, advocating for your child, celebrating progress, and discovering that you are never truly alone.

Whether you're a parent facing a new diagnosis, a caregiver, a medical professional, or someone who wants to better understand life with rare epilepsy, this is a conversation filled with perspective, encouragement, and hope.

🔔 Subscribe to The KCNA2 & Rare Epilepsy Podcast for more real stories, educational conversations, and connections within the rare epilepsy community.

Visit our website https://www.kcna2epilepsy.org/ to learn more about our community and all the work being done to find a cure for KCNA2 today.

What if one of the most serious risks of epilepsy was something you had never been warned about... even if you worked in medicine?

Dr. Naum Shaparin and Joanne Tzanos lost their 10-year-old son, Mark, just 12 days after his first seizure. Despite their medical backgrounds, neither had been warned about SUDEP (Sudden Unexpected Death in Epilepsy), a devastating reality that would forever change their family.

In this deeply personal episode of The KCNA2 & Rare Epilepsy Podcast, Dr. Nancy Musarra speaks with Mark's parents about their heartbreaking loss, the gaps in epilepsy education, and why they believe every family deserves to understand the risks associated with seizures.

Mark was a joyful, energetic boy who brought people together and left a lasting impression on everyone he met. After his first seizure, his family was reassured that he had a common childhood epilepsy condition with a favorable prognosis. Just 12 days later, their lives changed forever.

Determined to turn their grief into meaningful action, Dr. Shaparin and Joanne founded The Mark Shaparin Foundation in 2024 to celebrate their son's life. Their goal is to share Mark's legacy through awareness, education, and action to prevent Sudden Unexpected Death in Epilepsy (SUDEP).

Through their advocacy, they hope to ensure that families and healthcare professionals have the knowledge and resources to ask important questions, understand potential risks, and make informed decisions about epilepsy care.

**In this episode, we discuss:**

- What SUDEP is and why every family affected by epilepsy deserves to know about it - Mark's story and the 12 days between his first seizure and his death - Why conversations about epilepsy risks are so important - Seizure monitoring, nighttime safety, and emergency preparedness - Questions families can ask their neurologists about SUDEP risk - The lasting impact of losing a child on an entire family - How Mark's parents are working to improve epilepsy education and awareness

This conversation is difficult, but it is also filled with purpose, love, and a powerful message: Families deserve information, honest conversations, and the opportunity to make informed decisions about their loved ones' care.

Whether you are a parent, caregiver, person living with epilepsy, healthcare professional, or member of the rare disease community, we hope this episode encourages meaningful conversations that can help protect lives.

Learn more about Mark's legacy and his family's SUDEP awareness efforts: https://www.markshaparinfoundation.org/

If this conversation resonates with you, please share it with another family, caregiver, or healthcare professional. Awareness begins with conversations, and every conversation matters.

Follow us online at https://www.kcna2epilepsy.org/

Subscribe to this channel for more stories, education, advocacy, and hope from the rare epilepsy community.

Disclaimer: This episode discusses the death of a child, SUDEP, grief, and the mental health impact of losing a loved one. This podcast is for educational and informational purposes only and is not a substitute for individualized medical advice. Please discuss seizure safety, SUDEP risk, and emergency planning with your healthcare team.

For families caring for a child or loved one with epilepsy, autism, or complex medical needs, nighttime can bring a whole new set of worries. What happens if they wander out of bed? What if they experience a seizure, fall, or get into something dangerous while everyone is asleep?

In this episode of The KCNA2 & Rare Epilepsy Podcast, host Dr. Nancy Musarra welcomes Jamie Overman from Abram's Nation, the company behind The Safety Sleeper, to discuss nighttime safety, wandering (also called elopement), sleep challenges, and the importance of peace of mind for caregivers.

Jamie shares the inspiring story of how one mother's determination to keep her son safe led to the creation of The Safety Sleeper, an enclosed safety bed designed for individuals with a variety of medical and developmental needs.

Together, they explore how safety beds work, who may benefit, common concerns about enclosed beds, travel options, and ways families can explore insurance coverage and financial assistance.

They also discuss something every caregiver understands: when your loved one is safe, the entire family has a better chance to rest.

Whether you're raising a child with KCNA2-related epilepsy, supporting someone with autism, caring for an individual with developmental disabilities, or navigating nighttime safety concerns, this conversation offers practical information, encouragement, and resources.

💜 Helpful Resources & Websites:

KCNA2 Epilepsy Foundation: Learn more about KCNA2-related epilepsy, family support, research, and community resources. https://www.kcna2epilepsy.org/

The Safety Sleeper: Explore enclosed safety beds, features, and options for individuals with special needs. https://safetysleeper.com/

Abram's Nation: Learn more about the company behind The Safety Sleeper and its mission to help families create safer sleeping environments. https://www.abramsnation.com/

At The KCNA2 & Rare Epilepsy Podcast, we believe that sharing experiences, providing education, and connecting families with helpful resources can make a meaningful difference.

If nighttime safety or sleep challenges are part of your family's journey, we'd love to hear from you in the comments.

Subscribe to The KCNA2 & Rare Epilepsy Podcast for more conversations about rare epilepsy, research, treatments, caregiving, family experiences, and hope.

This episode is intended for educational purposes and does not replace individualized medical advice. Families considering an enclosed safety bed should work with qualified healthcare professionals to assess safety, accessibility, and individual needs.