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

Abby is a fraternal twin and within her first few months of life her mom Amy could tell that something was a little different with Abby but she didn't know what. She had speech delays, gross motor delays but just didn't know what it could be. Then at the age of 7 Abby was going to get her tonsils removed with the doctor, who happed to have studied 22q, was able to look at Abby and tell that she had 22q. That is when she was sent for genetic testing which then confirmed his hypothesis.

This episode was recorded on May 17, 2023

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Within this episode we discussed:

• acid reflux
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• speech delays
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• gross motor delays
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• 7 had her tonsils removed and the doctor had studied with doctor who discovered 22q and suspected that Abby had VCSF.
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• Genetic testing confirmed that she had 22q.
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• Syracuse specialist to do a series of tests
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• Pharyngeal flap speech
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• Scoliosis
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• Spinal fusion surgery at CHOP

• ⁠22q Center Children's Hospital of Philadelphia⁠

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

When Mikey was younger he didn't know he even had 22q until his open heart surgery at the age of six. He started to notice that he had health issues that his friends and classmates didn't have to contend with. Mikey never let his diagnosis hold him back and continued to follow his passion for music, especially playing the drums. Picking up his first set of drum sticks at the age of four, Mikey realized he had a superpower. He was able to play the drums by ear and did not have to read sheet music. His passion for drums landed him spot in his current band named Hills Block View. Check out the links below to listen.

This episode was recorded on May 8, 2023

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Within this episode we discussed:

• BAND - Hill Blocks View - Website
• Instagram @hillblocksviewofficial
• Facebook @hillblocksviewofficial
• YouTube Page @hillblocksviewofficial
• Spotify
• Apple Music
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• Knee difficulties
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• We Got The Beat - Drum Class
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• Roosevelt School For The Arts, Fresno, CA
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• Giants Baseball Fan @sfgiants
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• Bullying
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• CHOP - 22q Magazine Cover Model - 22q11.2 Deletion Bringing the 22q11.2 Deletion Into the 21st Century June 22-25 2000. The Children's Hospital of Philadelphia. @childrensphila
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• 22q Center Children's Hospital of Philadelphia
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• Mikey on Instagram @mikeyplaysdrums

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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

Shelby is an adult living with 22q and has a passion for sewing. She began sewing at the age of 11 and has been sewing every since. Making quilts for individuals with 22q and mailing them across the country. She has made over 43 quilts to date and doesn't intend on stopping any time soon.

Her mom, Stacy also shared how scary and challenging Shelby's first few years of life were. Shelby had genetic testing done around the age of one but nothing came back positive. So at two and half years old, she sent to a clef and pallet team, who were able to diagnose her and test her for 22q. Stacy remembers receiving that phone call that confirming that her daughter had 22q. As she hung up the phone she felt numb and crushed all at once. She knew she had to learn Shelby and what this new diagnosis meant for her baby girl.

Links:

Shelby's Stories FB: https://www.facebook.com/groups/450865518418577/?ref=share_group_link

22q Postcard Swap: https://www.facebook.com/groups/270932664985684/?ref=share_group_link

Amazon Wish List: https://www.amazon.com/hz/wishlist/ls/1K2FHPHP6UIZM?ref_=wl_share

Walmart Wish List: https://www.walmart.com/registry/ER/f426d3b8-347b-42b8-8a9d-5240a9b99bb8

••••••••••••••••••• 

Within this episode we discussed:

• Teaching Shelby to advocate for herself
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• 22q family foundation
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• Nationwide National Confrence for 22q
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• 2 sinus surgeries
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• 2 hernia repairs
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• Left Knee Surgery - patella instabilities
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• Hypoparathyroidism
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• “I have 22q but 22q doesn’t have me.” -Shelby
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• Shelby on Instagram @

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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

Email - 22qpodcast@gmail.com

#22qpodcast

Brady Murray is the President and Founder of a non-profit called RODS Heroes which helps orphan children who have unique challenges find their forever family. In this episode Brady shares one particular orphan named Johan. Johan is a sweet, quiet-natured fifteen year old boy who has been in an orphanage since he was 6 years old and will be aging out of adoption by the end of November 2023. Brady hopes to find a family for Johan soon and give him a chance to live a full life of love and reach his highest potentials. Johan deserves the chance to shine his light outside of the walls of an orphanage.

Brady also shares his personal perspective as a dad and his son Ridge, who was diagnosed with 22q at the age of 2. He shares how challenging it has been navigating Ridge's "invisible diagnosis" of 22q compaired to his other son's diagnosis of Down Syndrome. Brady used a beautiful analogy saying when he found out about his other son's diagnose of Downs Syndrome it felt like someone switched on a light and he dove head first into that diagnosis and becoming a special needs parent. But compared to Ridge's 22q diagnosis, for Brady it has felt more like a slow sunrise that he is beginning to learn more about 22q with time.

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Within this episode we discussed:

• RODS Heroes - Non Profit Organization - www.rods.org

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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

Email - 22qpodcast@gmail.com

#22qpodcast