Miracle Pelayo's Story
My name is Miracle Pelayo, and this is my story. I was born 23 weeks early, weighing just 1 lb 12 oz. The doctors gave me a 5% chance of...
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Finn was always meant to be here…
Written by Ally Reyes I was about 12 weeks pregnant when I got a phone call from my midwife. “Hi Ally, I got the results back from your...
Tatertot Takes the World!
Writen by Katie Burwell We received Tatum’s diagnosis of Down syndrome at birth. To say it was a shock would be an understatement,...
Accessibility: A Right, Not a Privilege
By: Kristen Millar I took my son to yet another appointment at his paediatrician’s office today. I was ecstatic that we were able to...
Francesca's Mental Health Journey
By Francesca Jaffe Every year I spend a lot of time thinking and reflecting on Mental Health Awareness Month. Honestly, I think of my...
Marci + Freya: Journey With CdLS
Written by: Marci Dunning My name is Marci. I spend hours everyday trying to convince complete strangers that my daughter's life has...
Rick + Erik: Journey through CdLS
Written by: Rick Oberg As I write this, it's been 37 years, 156 days, and 8 hours since Erik arrived. And after everything we've been...
Mother’s Day in the Extra Lucky Community
By Taryn Lagonigro As we take time to celebrate Mother’s Day this weekend, we acknowledge that this holiday can sometimes be experienced...
Supporting Your Child's Mental Health Needs
Written by: Erica Realpe, MA, LMFT, and Co-Author of Dear Mama, Stories of an Extra Lucky Life As parents with children with a...
Navigating Mental Health Challenges in Marriage: Tips from the Extra Lucky Community
Written by: Erica Realpe, MA, LMFT, and Co-Author of Dear Mama, Stories of an Extra Lucky Life In the Extra Lucky Community, we've...
Limb Loss/Difference Awareness Month: The Possibilities Are Endless
Written By: Elena Croy, Co-Author of Dear Mama: Stories of an Extra Lucky Life I’ve learned to quietly observe my children as they travel...
Luciann + Mia: Diagnosis Journey
Written by: Luciann DePasquale I knew I wanted to be a mom for as long as I could remember. When I found out that I was pregnant with...
Amanda + Liam: Disability, Travel and Jerry Beck
Written by: Amanda Lukof This is a three-part series. Parts one and two are included here in this blog post. Part three is coming soon!...
Tori + Jack: From Autism Diagnosis to Advocacy
Written by Tori McKenna I’m Jack’s mom. There was a period of time when that phrase scared me a little bit! Jack has been an extremely...
Latrenda's Story: Fighting for an Inclusive World
Written by: Latrenda Zabaleta I’ve been fighting for an inclusive world ever since primary school. I always found myself befriending the...
Sarah + Halle: Sleep Update
Written by: Sarah Raphael Sleep. Probably one of the most significant pieces to the ‘health’ puzzle. It’s been a big buzzword in our...
Kate + Ellis: Journey with an Extra Chromosome
Written by: Kate Fowler My name is Kate Fowler and I am the lucky mama to Ellis, our 2 year old son sporting an extra chromosome. I feel...
Paula + Alex: Journey with Shwachman Diamond Syndrome
Written by: Paula Fetzer My journey as a mother of a child with a rare disease began when I had my 20-week ultrasound while pregnant with...
Empowering Disability Families: The Connected Parent
Written by: Julie Walters As the mother of a child who is autistic, has epilepsy and a rare disease (PCDH19), I know firsthand how...
Kristen + Ellis: Trusting Your "Mom Gut"
Written by: Kristen Millar Ellis was throwing curve balls from the womb. It was an eventful pregnancy but what was even more eventful was...
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