It is a new month and that means a new family to feature. Today we are talking with Robyn and Glen the parents to precious and magical Luna from Las Vegas, Nevada. I am going to let Robyn and Glen tell you about her diagnosis and even how to pronounce it. I have tried and still haven’t succeeded. They are the ones who are educated. Which is actually a theme of this weeks episode. Not how to pronounce these diagnoses, but learning and working knowledge of them and how to advocate for your child and beyond.

Connect with Robyn and Glenn
https://www.instagram.com/the_empathic_nutritionist/
https://www.facebook.com/robyn.grogitsky

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https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/

Today we get to hear some advice from these parents who have kept going even in the storm. But not only that, we get to hear about how they have gone beyond their initial anger and grief and have turned their journey outward and have begun a foundation called lightening and love to help with the research of other future diagnoses similar to Emmy and abby’s.

Connect with Mark and Mariah
www.lightningandlove.org
https://www.instagram.com/lightningandlove/
https://twitter.com/mariahgillaspie

Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/

Today we have with us Mark and Mariah the parents to Emma and Abby from Centennial, Colorado. These sweet sisters not only share a powerful sibling bond, but also share an ultra-rare undiagnosed genetic mutation that is so rare that they are the first two cases in the world. This mutation leads to infantile Spasms, Epilepsy, Lennox-Gastaut Syndrome and more.
They share with us their very unique medical journey as well as the impact their close community has had on them.
This is Part 1 of 2.

Connect with Mark and Mariah
www.lightningandlove.org
https://www.instagram.com/lightningandlove/
https://twitter.com/mariahgillaspie

Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/

This is part 2 of our conversation with Matt and Liz the parents to Teddy who has Dup15q. Teddy has a personality that is contagious and leaves in imprint on everyone he is around. Matt and Liz give us a glimpse into their growth and life lessons with Teddy as their joyful son. Liz also talks about the importance of advocacy and how that can carry you as a caregiver to your kiddos.

Connect with Matt and Liz
https://www.facebook.com/elizabeth.bronson.1
https://www.instagram.com/elizabethnicole88/

Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/

Today’s interview involves a medical journey with many twists and turns leading to where they are at now. We are taking to Matt and liz who are the parents to Teddy who has Duplication on 15q chromosome or better known as Dup15q. You will hear an incredible story from two incredible parents with personalities that you will easily get attached to. One aspect of their story that is valuable to someone who may be going through something similar, is how they noticed and reacted to Teddy’s missed milestones.

Connect with Matt and Liz
https://www.facebook.com/elizabeth.bronson.1
https://www.instagram.com/elizabethnicole88/

Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/

Today’s conversation is with Samantha and Addison, the parents to 3 year old Sydney from Ceresco, NE who has been diagnosed with Infantile Neuraxonal Dystrophy; a very rare genetic disease that only affects 300-500 people worldwide. Sydney has a profound impact on anyone she comes in contact with
and leaves an imprint on peoples hearts. This episode lets us in on who Sydney is and her complicated medical journey.



Connect with Addison and Samantha
https://www.facebook.com/groups/sydthekid/

Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/

This is Part 2 of the conversation with Craig and Denise, the parents to Fletcher who is an amazing kid from Oklahoma City, Oklahoma. Fletcher has Epidermal Nevus Syndrome. Today we talk about acceptance and kindness. Two words that express everything fletcher gives out, but not always what is received. The social media experience for quite a few of our families is full of support and love and community. Sadly this isn’t always the case as Craig and Denise discovered by simply posting about Fletcher achieving a milestone.

Connect with Craig and Denise
https://www.instagram.com/Mommyburns/
https://www.facebook.com/denise.milgrimburns/

Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/

Our conversation today is with Craig and Denise the parents to Fletcher.
Fletcher is a funny and kind 15-year-old living in Oklahoma who has Epidermal Nevus Syndrome. He is a true people-person and loves talking to anyone and everyone. This is part 1 of 2 conversations with Craig and Denise as they share with us their challenges with Fletchers medical journey and their life adjustments.

Connect with Craig and Denise
https://www.instagram.com/Mommyburns/
https://www.facebook.com/denise.milgrimburns/

Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/

Colton and Katie, the parents to Shiloh who is the feature kiddo for June 2020, continue sharing with us about their journey into the diagnosis of Cri Du Chat syndrome for Shiloh. They tell us about how life has changed since the official diagnosis. There obviously has been adjustments, both logistically as well as relationally and emotionally. Colton and Katie graciously share their hearts and what they have learned in the past year.

Connect with Colton and Katie
https://www.instagram.com/colton.christofferson/
https://www.instagram.com/katiechristofferson_/
https://www.facebook.com/katie.christofferson.12
https://www.facebook.com/colton.christofferson.92

Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/

Josh talks with Colton and Katie, the parents to Shiloh who is the feature kiddo for June 2020. Shiloh is the sweetest 11 month old girl who has Cri Du Chat Syndrome. Colten and Katie talk about the early days of their journey from tests during pregnancy reading that things were normal, to further tests that suggest something else. They talk about their time in the NICU and describe the setting of the uncertainty and confusion of waiting for answers after delivery.
Connect with Colton and Katie
https://www.instagram.com/colton.christofferson/
https://www.instagram.com/katiechristofferson_/
https://www.facebook.com/katie.christofferson.12
https://www.facebook.com/colton.christofferson.92


Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/