22q Podcast

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

18/12/2024

https://youtu.be/e-aq6e_Efk4?si=DjN-7PIMeyFFplku

Kevin's journey is one filled with immense challenges, incredible resilience, and love. From his very first moments of life, it was clear that his path would...

18/12/2024

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18/12/2024

https://youtu.be/IKVh8aqeY3g?si=DpRxyF6BgMlYcIjq

Kevin's journey is one filled with immense challenges, incredible resilience, and love. From his very first moments of life, it was clear that his path would...

18/12/2024

https://youtu.be/IKVh8aqeY3g?si=DpRxyF6BgMlYcIjq

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18/12/2024

Listen now!
https://open.spotify.com/episode/3xlwmXGaHMxIOuskezeGQ8?si=tIGC8fiuQMm5Ru3qKgWFyQ&fbclid=IwZXh0bgNhZW0CMTAAAR1Ofs3y9b-OmLv9B-d95FuXKF2KQPQ7PwT-_yf3lQxATuJNYKuVH_yfTHY_aem_AFrP9f4-UmnwdQ2HRFn1WQ&nd=1&dlsi=903dff601e184e72

Kevin's journey is one filled with immense challenges, incredible resilience, and love. From his very first moments of life, it was clear that his path would not be an easy one. Born at 36 weeks, Kevin entered the world under difficult circumstances, with both his mother Ranisha and himself facing drops in blood pressure that required an emergency C-section.
The family was already aware of the risks associated with his pregnancy due to his known heart complications. But when they learned that Kevin had a congenital heart defect, specifically Tetralogy of Fallot with Pulmonary Atresia and MAPCAs (Major Aortopulmonary Collaterals), they were faced with the sobering reality of the battles their newborn would need to fight. Tetralogy of Fallot is a combination of four heart defects that affect blood flow, and pulmonary atresia (where the pulmonary valve doesn’t form properly) complicates this further, leading to insufficient oxygen in the blood. MAPCAs refer to abnormal blood vessels that develop to compensate for a blocked or absent pulmonary artery.
Despite the overwhelming nature of this diagnosis, Kevin’s parents refused to let the odds dictate his future. They sought out the best medical care available, traveling all the way to California to consult with a leading heart surgeon who specializes in complex congenital heart conditions. This decision to go the extra mile for Kevin’s treatment proved to be pivotal, as it ensured he received the very best care from a team of doctors who were highly experienced in performing life-saving surgeries for babies with conditions like Kevin’s.
What followed were likely some of the most difficult days for Kevin’s family—long hospital stays, surgeries, and ongoing medical interventions. Yet, Kevin's resilience, along with the support of his loving family, gave them the strength to face each new hurdle.
But Kevin’s journey didn’t end with heart surgery. Along with the heart condition, Kevin was later diagnosed with 22q11.2 deletion syndrome. This genetic disorder can cause a range of issues, including heart defects (like the one Kevin had), immune system problems, developmental delays, and learning difficulties. The combination of his heart condition and 22q11.2 deletion added another layer of complexity to his care.
Yet, throughout it all, Kevin's family never lost hope. With each medical challenge, they fought with determination and found strength in one another. From finding the best possible doctors to supporting Kevin through each step of his treatment, they kept fighting for his health and happiness. And Kevin, in turn, showed a remarkable will to survive and thrive.
Kevin’s 22q journey is a testament to the power of love, the importance of expert care, and the unyielding strength of a family that refuses to give up on their child, no matter how difficult the road ahead may be. His story is not only one of survival but also of growth, hope, and an unbreakable bond between him and his family, who continue to stand by him through every challenge.
This episode was recorded on October 4, 2023
•••••••••••••••••••
Within this episode we discussed:
Tetralogy of Fallot (teh-TRAL-uh-jee of fuh-LOW) is a rare heart condition that is present at birth. That means it's a congenital heart defect. A baby born with the condition has four different heart problems. These heart problems affect the structure of the heart. The condition causes altered blood flow through the heart and to the rest of the body. Babies with tetralogy of Fallot often have blue or gray skin color due to low oxygen levels.

Pulmonary atresia with ventricular septal defect (PA/VSD) and major aortopulmonary collateral arteries (MAPCAs) is a rare and complex congenital heart defect that can lead to pulmonary obstruction

Dr. Frank Hanley - Stanford Medical

Pepin Academies special education schools offer comprehensive programs tailored to students with learning disabilities in Tampa

If you would like to contact the 22q Podcast with any questions, comments or if you are interested on 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]

18/12/2024

LISTEN NOW
https://open.spotify.com/episode/3xlwmXGaHMxIOuskezeGQ8?si=tIGC8fiuQMm5Ru3qKgWFyQ&t=36

Kevin's journey is one filled with immense challenges, incredible resilience, and love. From his very first moments of life, it was clear that his path would not be an easy one. Born at 36 weeks, Kevin entered the world under difficult circumstances, with both his mother Ranisha and himself facing drops in blood pressure that required an emergency C-section.
The family was already aware of the risks associated with his pregnancy due to his known heart complications. But when they learned that Kevin had a congenital heart defect, specifically Tetralogy of Fallot with Pulmonary Atresia and MAPCAs (Major Aortopulmonary Collaterals), they were faced with the sobering reality of the battles their newborn would need to fight. Tetralogy of Fallot is a combination of four heart defects that affect blood flow, and pulmonary atresia (where the pulmonary valve doesn’t form properly) complicates this further, leading to insufficient oxygen in the blood. MAPCAs refer to abnormal blood vessels that develop to compensate for a blocked or absent pulmonary artery.
Despite the overwhelming nature of this diagnosis, Kevin’s parents refused to let the odds dictate his future. They sought out the best medical care available, traveling all the way to California to consult with a leading heart surgeon who specializes in complex congenital heart conditions. This decision to go the extra mile for Kevin’s treatment proved to be pivotal, as it ensured he received the very best care from a team of doctors who were highly experienced in performing life-saving surgeries for babies with conditions like Kevin’s.
What followed were likely some of the most difficult days for Kevin’s family—long hospital stays, surgeries, and ongoing medical interventions. Yet, Kevin's resilience, along with the support of his loving family, gave them the strength to face each new hurdle.
But Kevin’s journey didn’t end with heart surgery. Along with the heart condition, Kevin was later diagnosed with 22q11.2 deletion syndrome. This genetic disorder can cause a range of issues, including heart defects (like the one Kevin had), immune system problems, developmental delays, and learning difficulties. The combination of his heart condition and 22q11.2 deletion added another layer of complexity to his care.
Yet, throughout it all, Kevin's family never lost hope. With each medical challenge, they fought with determination and found strength in one another. From finding the best possible doctors to supporting Kevin through each step of his treatment, they kept fighting for his health and happiness. And Kevin, in turn, showed a remarkable will to survive and thrive.
Kevin’s 22q journey is a testament to the power of love, the importance of expert care, and the unyielding strength of a family that refuses to give up on their child, no matter how difficult the road ahead may be. His story is not only one of survival but also of growth, hope, and an unbreakable bond between him and his family, who continue to stand by him through every challenge.
This episode was recorded on October 4, 2023
•••••••••••••••••••
Within this episode we discussed:
Tetralogy of Fallot (teh-TRAL-uh-jee of fuh-LOW) is a rare heart condition that is present at birth. That means it's a congenital heart defect. A baby born with the condition has four different heart problems. These heart problems affect the structure of the heart. The condition causes altered blood flow through the heart and to the rest of the body. Babies with tetralogy of Fallot often have blue or gray skin color due to low oxygen levels.

Pulmonary atresia with ventricular septal defect (PA/VSD) and major aortopulmonary collateral arteries (MAPCAs) is a rare and complex congenital heart defect that can lead to pulmonary obstruction

Dr. Frank Hanley - Stanford Medical

Pepin Academies special education schools offer comprehensive programs tailored to students with learning disabilities in Tampa

If you would like to contact the 22q Podcast with any questions, comments or if you are interested on 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]

11/12/2024

https://youtu.be/CmVJgRInfTs?si=EQ8ycWpSgbdBrd_W
Watch our latest episode on our YouTube Channel 22qpodcast

Amy Jolley, a mother, yoga teacher, Social-Emotional Learning and Mindfulness Educator, and a deeply experienced child and family therapist. Amy is the founder of The Wellness Collective Women and Children, where she focuses on emotional well-being and mindfulness for families.

Amy holds a Master’s degree in Transpersonal Counseling Psychology, and her work is deeply rooted in the belief that we all enter this world with an incredible inner light. Her mission is to help adults reignite that light, and to nurture and protect it in children so it can shine brightly throughout their lives.

Through The Wellness Collective Women and Children, Amy works one family at a time, fostering awareness and emotional health, helping individuals become more attuned to their inner well-being. She has already supported several 22q families, and on this episode, she’s here to share her gifts and insights with all of us.

WEBSITE: www.wellnesscollectivewc.com
Instagram & Facebook:

This episode was recorded on September 11, 2023

•••••••••••••••••••

Within this episode we discussed:

The Wellness Collective Women and Children - www.wellnesscollectivewc.com

Kimochis are a therapeutic educational program that helps children learn to recognize, manage, and express their emotions - www.kimochis.com/home/

In My Heart: A Book of Feelings - https://www.amazon.com/My-Heart-Feelings-Growing-Hearts/dp/1419713108

Literally a BookShop - An incredible resource that has 'a highly curated collection of children's books that create connection, spark curiosity, and inspire joy.'
https://www.literallybookshop.com/
With a specific area: 'Feeling & Emotions'
Podcast Listeners may use the coupon code, “22QSUPPORT” and is valid through Jan. 31, 2025. for 10% off of a $50+ purchase

Wild Life Yoga - https://www.wildlifeyoga.com/ - Beautiful, nature-inspired partner poses cards. Also, free resources for kids and families on their website. Podcast listeners may you the code; JOLLLEYWELLBEING10 for 10% off their order.

Learn how to regulate emotions

If you would like to contact the 22q Podcast with any questions, comments or if you are interested on 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]

Amy Jolley, a mother, yoga teacher, Social-Emotional Learning and Mindfulness Educator, and a deeply experienced child and family therapist. Amy is the found...

11/12/2024

Ep. 37 Amy Jolley caring for the mind, body and spirit - The Wellness Collective Women and Children

Amy Jolley, a mother, yoga teacher, Social-Emotional Learning and Mindfulness Educator, and a deeply experienced child and family therapist. Amy is the founder of The Wellness Collective Women and Children, where she focuses on emotional well-being and mindfulness for families.

Amy holds a Master’s degree in Transpersonal Counseling Psychology, and her work is deeply rooted in the belief that we all enter this world with an incredible inner light. Her mission is to help adults reignite that light, and to nurture and protect it in children so it can shine brightly throughout their lives.

Through The Wellness Collective Women and Children, Amy works one family at a time, fostering awareness and emotional health, helping individuals become more attuned to their inner well-being. She has already supported several 22q families, and on this episode, she’s here to share her gifts and insights with all of us.

WEBSITE: www.wellnesscollectivewc.com
Instagram & Facebook:

This episode was recorded on September 11, 2023

•••••••••••••••••••

Within this episode we discussed:

The Wellness Collective Women and Children - www.wellnesscollectivewc.com

Kimochis are a therapeutic educational program that helps children learn to recognize, manage, and express their emotions - www.kimochis.com/home/

In My Heart: A Book of Feelings - https://www.amazon.com/My-Heart-Feelings-Growing-Hearts/dp/1419713108

Literally a BookShop - An incredible resource that has 'a highly curated collection of children's books that create connection, spark curiosity, and inspire joy.'
https://www.literallybookshop.com/
With a specific area: 'Feeling & Emotions'
Podcast Listeners may use the coupon code, “22QSUPPORT” and is valid through Jan. 31, 2025. for 10% off of a $50+ purchase

Wild Life Yoga - https://www.wildlifeyoga.com/ - Beautiful, nature-inspired partner poses cards. Also, free resources for kids and families on their website. Podcast listeners may you the code; JOLLLEYWELLBEING10 for 10% off their order.

Learn how to regulate emotions

If you would like to contact the 22q Podcast with any questions, comments or if you are interested on 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]

11/12/2024

https://youtu.be/mw30W5XbKqM?si=lf8-1PEFlrYkyHLY
Subscribe to our YouTube channel today.

Amy Jolley, a mother, yoga teacher, Social-Emotional Learning and Mindfulness Educator, and a deeply experienced child and family therapist. Amy is the found...

11/12/2024

https://youtu.be/mw30W5XbKqM?si=uWKXmJwQDkJXXp5V
Ep. 37 Amy Jolley caring for the mind, body and spirit - The Wellness Collective Women and Children

Amy Jolley, a mother, yoga teacher, Social-Emotional Learning and Mindfulness Educator, and a deeply experienced child and family therapist. Amy is the founder of The Wellness Collective Women and Children, where she focuses on emotional well-being and mindfulness for families.

Amy holds a Master’s degree in Transpersonal Counseling Psychology, and her work is deeply rooted in the belief that we all enter this world with an incredible inner light. Her mission is to help adults reignite that light, and to nurture and protect it in children so it can shine brightly throughout their lives.

Through The Wellness Collective Women and Children, Amy works one family at a time, fostering awareness and emotional health, helping individuals become more attuned to their inner well-being. She has already supported several 22q families, and on this episode, she’s here to share her gifts and insights with all of us.

WEBSITE: www.wellnesscollectivewc.com
Instagram & Facebook:

We have office-studio spaces in: Chandler, AZ Gilbert, AZ and events & gatherings throughout the East Valley. *Please inquire for location addresses. 480-375-8993

09/12/2024

https://youtu.be/X9p4q2CDguk

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Jill Strauss’s journey as a mother to her daughter, Vada, is a powerful story of resilience, love, and determination. From the moment Vada was born, Jill kne...

09/12/2024

https://fundraise.givesmart.com/e/p7KVkw?vid=1f6k6r

09/12/2024

To the global 22q community,
I want to express my heartfelt thanks for allowing me the privilege of sharing your stories, challenges, and moments of joy with the world. Your strength, resilience, and courage inspire me daily, and it is truly an honor to be a part of this journey alongside you.

With deep gratitude and respect,
Becky White