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

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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.”

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  • 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 22qpodcast@gmail.com. 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 - @22q.podcast⁠

  ⁠Facebook - @22qpodcast⁠

  ⁠YouTube - @22qpodcast⁠

  Email - 22qpodcast@gmail.com

  #22qpodcast

  #22q

  #22qdeletion

  #22q112deletionsyndrome

  #22qdeletionsyndrome

  #deletionsyndrome

  #22qcommunity

  #22qnotalone

  #22qfamily

  #DiGeorgeSyndrome

  #digeorgesyndrome

  #22qdiagnosis
  

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 22qpodcast@gmail.com. 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 - @22q.podcast⁠

⁠Facebook - @22qpodcast⁠

⁠YouTube - @22qpodcast⁠

Email - 22qpodcast@gmail.com

#22qpodcast

#22q

#22qdeletion

#22q112deletionsyndrome

#22qdeletionsyndrome

#deletionsyndrome

#22qcommunity

#22qnotalone

#22qfamily

#DiGeorgeSyndrome

#digeorgesyndrome

#22qdiagnosis

Imagine being told by a physician that your 2 year old daughter will probably never finish school, be able to drive, have a career and will possibly be institutionalized for schizophrenia. Back in 1994 this is what Cathy was told about her daughter Nadia during a routine doctor's appointment. They had just received the confirmation that Nadia was diagnosed with 22q and within this episode you will hear about Cathy and Nadia’s 22q journey. Stories like Nadia’s can help raise awareness about the potential in every person, no matter what challenges they may face. Cathy and Nadia’s story also sheds light on the importance of parental advocacy, the strength of support networks, and the role of early intervention and therapy. Nadia is now in her 30’s. She has a career as a photojournalist for her local paper and I am happy to report that her physician’s prediction back in 1994 was completely wrong.

This episode was recorded on October 16, 2023

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Within this episode we discussed:

• • Heart Surgery right aortic arch, pneumonia, aspirating, ear tubes, pallet surgery,

  • UCLA 22q study

  • Daytona state college - photo program

  • Nadia’s Photojournalism YouTube page: https://youtu.be/qxgbBe_Kmlc?si=gXU4J3Eul5wKoTAM

  • https://globalgenes.org/blog/a-young-womans-story-of-living-with-22q11-2-deletion-syndrome/

  • @nadiarosephotos

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 22qpodcast@gmail.com. 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 - @22q.podcast⁠

⁠Facebook - @22qpodcast⁠

⁠YouTube - @22qpodcast⁠

Email - 22qpodcast@gmail.com

#22qpodcast

#22q

#22qdeletion

#22q112deletionsyndrome

#22qdeletionsyndrome

#deletionsyndrome

#22qcommunity

#22qnotalone

#22qfamily

#DiGeorgeSyndrome

#digeorgesyndrome

#22qdiagnosis