22q Podcast

Becky White

The 22q Podcast is a place for individuals connected to the 22q community to share their stories. We will hear from those living with 22q, parents of 22q children, & medical/educational professionals who will share their knowledge, successes and struggles about this syndrome. 22q11.2 deletion syndrome is a disorder caused by small missing portions of the 22nd chromosome. This can result in a unique combination of over 180 different symptoms. It occurs in approximately 1 out of every 2,000 live births, it is the second most common genetic disorder after Downs Syndrome.

Categories: Kids & Family

Listen to the last episode:

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.”

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.

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