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 Rahnesha 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. 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

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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.

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• 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

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• Dr. Frank Hanley - Stanford Medical

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

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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 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

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: @wellnesscollectivewc This episode was recorded on September 11, 2023 •••••••••••••••••••

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• 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, "22QFoundation" 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 use the coupon code, “22QSUPPORT” and is valid through Jan. 31, 2025. for 10% off of a $50+ purchase • Learn why regulating emotions is so important

••••••••••••••••••• 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 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

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 knew something wasn’t quite right. At just five months old, Vada's medical challenges became apparent, and Jill embarked on a search for answers. This search led her down many paths, filled with medical tests, specialists, and countless hours spent researching her daughter’s symptoms.

It wasn’t until later that the mystery was finally solved when Vada underwent a microarray test, which confirmed that she had 22q deletion syndrome. For Jill, learning that Vada had 22q deletion syndrome was a bittersweet moment — while it provided a diagnosis and an explanation for many of the challenges Vada had faced, it also marked the beginning of an entirely new journey. It meant navigating the complexities of the condition, understanding its many facets, and finding support and resources for both Vada and herself.

Throughout this journey, Jill has faced numerous obstacles. One of the most significant challenges has been Vada’s psychogenic polydipsia — a condition that causes her to drink excessive amounts of water, which can lead to serious health risks if not carefully managed. Along with this, Vada has a heart defect that requires ongoing monitoring and care. Sensory challenges have also been a part of Vada’s daily life, affecting everything from her ability to process certain textures and sounds to her response to various sensory inputs in her environment.

Being a “22q mom” isn’t always easy, and Jill has openly shared her experiences to help others understand the reality of living with a child who has such a rare genetic condition. For Jill, it's not just about the medical journey — it’s about understanding the emotional and psychological toll these challenges can take. It's about finding strength in the face of uncertainty, advocating fiercely for her daughter, and creating a supportive environment that allows Vada to thrive despite the many hurdles she faces.

Through it all, Jill has learned that being a “22q mom” means being adaptable, resourceful, and incredibly patient. She’s learned to celebrate Vada’s victories, no matter how small, and to embrace the beauty and joy that her daughter brings into the world, even on the tough days. Jill’s openness about her journey serves as a beacon for other families facing similar challenges, offering them a sense of community, hope, and understanding.

For Jill, the journey is ongoing, but every step is a testament to the deep love she has for her daughter and her unwavering commitment to helping Vada live her best life.

This episode was recorded on May 26, 2023

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Within this episode we discussed:

• Speech delay - apraxia

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• Extreme Thirst - Psychogenic polydipsia

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• McMaster Children's Hospital Ontario Canada

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• Sodium levels

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• Heart defect - bicuspid aortic valve

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• Mental health, anxiety, OCD and sensory

  
  

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 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