Extra Needs; Extraordinary Lives

Joni Brown's life was turned upside down when her daughter, out of nowhere, began having epileptic seizures at sixteen months and was diagnosed with autism at age five. Two books in one; first part memoir of raising her child with special needs with stories from medical mayhem heartaches to overcoming challenges with humor. Second part has parenting tips, offering first-hand practical advice and invaluable suggestions.


You'll learn
- First-hand stories from a mom who lives it
- What new parents can expect in this special life
- How to be your child's strongest advocate


Don't Sing Happy Birthday is a beacon of hope, encouraging parents to shift their mindsets, become strong advocates, and find the support they need to be the best possible caregivers and cheerleaders for their children living with extra needs. Joni Brown's heartfelt message is clear: You're not alone on this journey, and together, we can conquer the challenges and celebrate the beauty in our special lives.


Joni Brown is a dedicated mother and author who shares her journey parenting her daughter, Allie, who lives with multiple medical issues including autism and PCDH19 epilepsy. She lives in Castle Rock, CO with her husband and two children.

Rare

REFLECTION
RARE DISEASE

February 29 is Rare Disease Day. Not a day I celebrate honestly, but a day of awareness and reflection. My teenage daughter, Allie, was born with a rare genetic condition called PCDH19 epilepsy, which also includes autism, intellectual, and developmental delays.
Since Allie's first seizure at 16 months old, she has suffered thousands of seizures now in her 16th year. She has failed dozens of anti-seizure medications. She has been unsuccessful with medical marijuana treatments. In May 2016 had a vagus nerve stimulator implanted. And, tried various diet restrictions. After all of these efforts, I cannot report she is seizure-free. 
Fortunately, it's not all gloom and doom with this happy spirited teen because PCDH19 Epilepsy is not who my daughter is. Allie is so much more than a diagnosis. She is happy and living a full life. Whether it's skiing down double blacks in Breckenridge CO, swimming on the Special Olympic team with her friends or cleaning up parks with her brother with a trusty metal detector that nana bought; she is loved, she is happy and living her best life. 

welcome

I'm Joni and I write about Allie, my
daughter living with
PCDH19 Epilepsy and autism
​and our journey. 
Writing is my therapy.
​What a beautiful purpose I have.
Thank you for visiting.
Content on this website and blog are for informational purposes only. Contents on this website should not
​be considered medical advice. Readers are encouraged to talk to their physician for health-related issues.