22q Podcast

01/07/2025

When Brittney welcomed her son Gavin into the world in 2017, something didn’t feel right—though he cried, there was no sound. Despite reassurances, her gut t...

29/06/2025

Check out Lakyn’s legacy foundation! Give them a like and a follow.

Non profit

29/06/2025

https://podcasts.apple.com/us/podcast/ep-40-a-mothers-intuition-brittney-gavins-22q-journey/id1650276141?i=1000714065177

When Brittney welcomed her son Gavin into the world in 2017, something didn’t feel right—though he cried, there was no sound. Despite reassurances, her gut told her otherwise. What followed was a harrowing yet inspiring journey: Gavin couldn’t eat, struggled to nurse, and vomited constantly for years. Brittney spent sleepless nights sitting upright, holding on to hope. Finally, at age 3½, Gavin was diagnosed with 22q deletion syndrome.

This episode is a raw and powerful story of maternal instinct, medical mystery, and unwavering love. Join us as Brittney shares her incredible journey navigating the unknown and fighting for answers—because sometimes, a mother just knows.

This episode was recorded on October 23, 2023

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Within this episode we discussed:

Submucous cleft palate (SMCP) is a congenital condition where the muscles of the soft palate don't fuse properly, while the outer lining of the palate (mucosa) appears intact.

The Declarative Language Handbook by Linda Murphy

The Coregulation Handbook by Linday Murphy

Book Creator https://bookcreator.com/

Alternative communication device or "talker" - also useful for social stories: Touchchat https://touchchatapp.com/

Text to Speech iPad app: Read-Write

https://apps.apple.com/us/app/read-write/id934749270

For writing practice / and useful for kiddo's with fine motor challenges: Letter School

https://apps.apple.com/us/app/letterschool-learn-to-write/id481067676

Hornby Island Vancouver, British Columbia Canada

If you would like to contact the 22q Podcast with any questions, comments or if you are interested in being on this podcast email Becky at [email protected]. Don't forget to subscribe and share this podcast to help raise awareness about 22q. And never forget 22q family that YOU are not alone.

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Email - [email protected]

29/06/2025

https://open.spotify.com/episode/1VXAnvUmPb9lYnGg0jgsbI?si=rNsIVTyXR1W3ZQFeBJkTGQ

In this powerful episode, we sit down with Kayla, an early childhood educator from Colorado Springs, as she bravely shares her journey through unimaginable loss and unwavering love. After marrying her husband while he was in the service, Kayla was excited to start a family — but life had other plans.
Her first daughter, Lakyn, was born 11 weeks early and diagnosed with a rare and severe congenital heart defect associated with 22q11.2 deletion syndrome — a condition Kayla had never heard of, despite her background working with children with special needs. After 45 days filled with strength, milestones, and heartbreak, Kayla and her husband were forced to make the devastating decision to say goodbye.
The heartbreak continued — a second pregnancy ended in stillbirth, and a third was clouded by fear and uncertainty. Today, Kayla is the proud mother of a healthy little girl named Paige and the founder of Lakyn’s Legacy Foundation, a nonprofit supporting Colorado families navigating NICU stays and genetic diagnoses, created in honor of Lakyn’s life.
Kayla opens up about grief, trauma, faith, and the many ways families cope with loss. Her story is one of resilience, advocacy, and the incredible power of turning pain into purpose.
Learn more:⁠ www.lakynslegacyfoundation.org⁠

This episode was recorded on October 24, 2023
•••••••••••••••••••
Within this episode we discussed:

Diagnosed at 20 weeks with Pulmonary Atresia with Ventricular Septal Defect (PA-VSD)

“They say time heals, but losing a child is forever.”

Founded Lakyn’s Legacy Foundation to honor her daughter and support NICU families at Colorado Children’s Hospitals

Website: ⁠www.lakynslegacyfoundation.org⁠

Turned to faith and community to cope with trauma
Emphasizes grieving on your own terms
Encourages connection with others who have experienced similar losses

If you would like to contact the 22q Podcast with any questions, comments or if you are interested in being on this podcast email Becky at [email protected]. Don't forget to subscribe and share this podcast to help raise awareness about 22q. And never forget 22q family that YOU are not alone.
⁠Instagram - .podcast⁠
⁠Facebook - ⁠
⁠YouTube - ⁠
Email - [email protected]













The 22q Family Foundation
22q Podcast

29/06/2025

Episode 41: “Kayla’s Story: Love, Loss, and Lakyn’s Legacy”
In this powerful episode, we sit down with Kayla, an early childhood educator from Colorado Springs, as she bravely shares her journey through unimaginable loss and unwavering love. After marrying her husband while he was in the service, Kayla was excited to start a family — but life had other plans.

Her first daughter, Lakyn, was born 11 weeks early and diagnosed with a rare and severe congenital heart defect associated with 22q11.2 deletion syndrome — a condition Kayla had never heard of, despite her background working with children with special needs. After 45 days filled with strength, milestones, and heartbreak, Kayla and her husband were forced to make the devastating decision to say goodbye.

The heartbreak continued — a second pregnancy ended in stillbirth, and a third was clouded by fear and uncertainty. Today, Kayla is the proud mother of a healthy little girl named Paige and the founder of Lakyn’s Legacy Foundation, a nonprofit supporting Colorado families navigating NICU stays and genetic diagnoses, created in honor of Lakyn’s life.

Kayla opens up about grief, trauma, faith, and the many ways families cope with loss. Her story is one of resilience, advocacy, and the incredible power of turning pain into purpose.
Learn more: www.lakynslegacyfoundation.org

28/06/2025

https://podcasts.apple.com/us/podcast/ep-40-a-mothers-intuition-brittney-gavins-22q-journey/id1650276141?i=1000714065177

28/06/2025

When Brittney welcomed her son Gavin into the world in 2017, something didn’t feel right—though he cried, there was no sound. Despite reassurances, her gut told her otherwise. What followed was a harrowing yet inspiring journey: Gavin couldn’t eat, struggled to nurse, and vomited constantly for years. Brittney spent sleepless nights sitting upright, holding on to hope. Finally, at age 3½, Gavin was diagnosed with 22q deletion syndrome.
This episode is a raw and powerful story of maternal instinct, medical mystery, and unwavering love. Join us as Brittney shares her incredible journey navigating the unknown and fighting for answers—because sometimes, a mother just knows.

22q Podcast The 22q Family Foundation

22/06/2025

https://creators.spotify.com/pod/show/22qpodcast/episodes/Ep--40---A-Mothers-Intuition-Brittney--Gavins-22q-Journey-e34iugo

When Brittney welcomed her son Gavin into the world in 2017, something didn’t feel right—though he cried, there was no sound. Despite reassurances, her gut told her otherwise. What followed was a harrowing yet inspiring journey: Gavin couldn’t eat, struggled to nurse, and vomited constantly fo...

29/01/2025

As a Consultant Child and Adolescent Psychiatrist working with children with complex needs, I've been reflecting on the fascinating and intricate nature of 22q11.2 deletion syndrome (22q11.

28/01/2025

ONLY 7 SPOTS LEFT!! Are you a caregiver in our community and need to find your people? Step out of your comfort zone and register for our next 22q Moms Retreat. "This is the weekend I never knew I needed," is the most common feedback we get from moms that have attended one of our retreats in the past. No matter the age of your child, we promise you will benefit from coming. We are also currently taking nominations for moms in need. To register or learn ore click here: bit.ly/22qmomsretreat25

28/01/2025

💜 To all the individuals living with 22q, enduring endless doctor’s appointments, I see you.

💜 To the parents and caregivers who tirelessly support their loved ones with 22q, I see you.

💜 To the countless hours you have spent traveling to hospitals, waiting in waiting rooms, I see you.

💜 To those who face endless testing, bloodwork, MRIs, ultrasounds, X-rays, echocardiograms and sedation each year just to maintain their health, I see you.

💜 To everyone in the 22q community who has to navigate the emotional weight of medical trauma from past experiences, I see you.

💜 To the caregivers who feel a rush of panic whenever their 22q loved one becomes ill, desperately hoping that they don’t end up at the ER or worst, I see you.

💜 For the days when it feels like hope is slipping away and there are no answers in sight—but you keep going, pushing forward no matter what, I see you.

💜 And I want you to know that this journey is not yours to walk alone. It’s a path shared by an entire community of people living with 22q deletion syndrome. You are never alone. If you ever need a place to feel heard, supported, or seen, remember the 22q Podcast is here. We’re here to share our stories, spread awareness, and dream together. Life isn’t meant to be lived in isolation—it’s meant to be shared, and I’m so grateful you’re here to walk this journey with me.

💜Becky White, host of the .podcast

16/01/2025