22q Podcast

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.

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Episodes

Ep. 11 Becky & Drew share Gabe's 22q Story

Drew was by Gabe's side in the NICU after he was born and over heard the doctors during their rounds. They mentioned that due to Gabe's tetralogy of fallot, Spina Bifida and a few other concerns that they would be testing him for 22q. This was the first time our family ever heard of this genetic syndrome. During this episode my husband and I share our son's 22q journey, from both parents perspective. ••••••••••••••••••• Within this episode we discussed: ETV/CPC Hydrocephalus Procedure - endoscop...

Feb 06, 2023•1 hr 11 min•Ep. 11

Ep. 10 Criss Madrigal and her 22q TWINS, Celeste & Alexia

For Criss Madrigal her 22q journey had double the love, struggles and joy. She is the lucky mom of not one but two amazing 22q twin girls, Celeste and Alexia. Within this episode she shares her difficult pregnancy and what it is like navigating her 22q cuties times two. She also shares how she became a life coach and how she learned the important lesson of taking care of yourself and putting yourself first. ••••••••••••••••••• Within this episode we discussed: Vision Therapy Here is the link for...

Jan 30, 2023•34 min•Ep. 10

Ep. 9 Susan Busch and Mike's 22q Story - Author of 'Yearning for Normal'

In 1983 Mickey was born and as a baby had many complications. His mother Susan was a nurse and always felt something was different about Mikey. It wasn't until one day while Susan was reading an article about Williams Syndrome that she thought she had found the diagnosis for her son. She set up an appointment at the genetics office and after completing there exam they determined that Mikey had 22q deletion syndrome. Susan retuned home and immediately started conducting her own research on the in...

Dec 16, 2022•48 min•Ep. 9

Ep. 8 Sibil and Andrew's 22q Story. Share your story and don't be ashamed

Sibil was induced at 35 weeks and successfully delivered her first son, Andrew. 9 days later he had his anticipated open heart surgery to repair his tetralogy of fallot with pulmonary atresia and it went beautifully. As Andrew was recovering in the NICU a geneticist entered and shared with Sibil and her husband that their son had 22q. They then met with a team of doctors who could explain what this meant for their son. Feeling overwhelmed, Sibil returned to her baby's side in the NICU. She picke...

Dec 02, 2022•49 min•Ep. 8

Ep. 7 Donna Cutler-Landsman: Author, Education Advocate & 22q Mom

For any parent, trying to navigate the education system can be challenging and overwhelming at times. Especially if you have a child with 22q. But we are fortunate to have Donna Cutler-Landsman in our corner. Donna has over 35 years of classroom experience and has worked with children with and without learning challenges. She is the author of an excellent book called, Educating Children with Velo-Cardio-Facial Syndrome, 22q11.2 Deletion Syndrome, and DiGeorge Syndrome, now in its third edition. ...

Nov 23, 2022•36 min•Ep. 7

Ep. 6 “This is my journey and I love it.” with Gracie Chavez

Gracie Chavez is the youngest of 5 siblings, owns her own florist business, loves legos, enjoys hanging out with family and she also has 22q. Her parents found out about her diagnosis when she was 2 but it wasn't until she was 20 when she began experiencing heart issues. This is what caused her to seek out more information about her 22q. We discussed her dreams, struggles and how she told the world that she had 22q. ••••••••••••••••••• Within this episode we discussed: Gracie's Outshine Labels M...

Nov 23, 2022•35 min•Ep. 6

Ep. 5 Eileen Nordemyer & Nate's 22q story

At three and a half years old Nate was having recurring ear infections which brought them to a well respected ENT office. They were waiting for the doctor to return with his residence and when he did he was carrying a large medical textbook. He walked over to Eileen, handed her the book, pointed at the words ‘Digeorge Syndrome’ and said “I think this is what Nate has.” In a complete state of shock Eileen returned to her car and began to cry, not knowing what this meant for her son. In that momen...

Nov 12, 2022•58 min•Ep. 5

Ep. 4 Kristine Watterson and Ben's 22q Story

Since the day Ben was born Kristine had this gut feeling that something was slightly different about her son. Whether it was his facial features being smaller, his reflux when he ate, constant eye infections, respiratory problems, ear infections, how small he was or how delayed he was with all of his developmental milestones. This prompted her to start seeking answers. Her pediatrician would dismiss her concerns and simply say, “all children are different.” But Kristine didn’t agree and spent 2 ...

Nov 02, 2022•50 min

Ep. 3 Laura Anderson and Zuri's 22q Story

It was their 4th day in the hospital and Laura and her husband were rolling their baby girl, Zuri, down to her first barium swallow study. They were trying to figure out why she was having so many feeding difficulties. As they reached the hospital elevator Zuri’s doctor ran to join them because he had her genetic test results. As the elevator doors closed the doctor informed them that Zuri had something called Digeorge Syndrome. This was the beginning of their 22q journey. Throughout this episod...

Oct 31, 2022•1 hr 9 min•Ep. 3

Ep. 2 Tara Abend & Emmalyn's 22q Story

Tara was celebrating her birthday at Disney Land and grabbing a bite to eat at Pizza Planet when her phone began to ring. It was the genetics office calling to give the results from her daughter, Emmalyn’s genetic test. She remembered thinking at that moment that if her daughter had 22q she didn’t want to know about it. She didn’t want her baby to be labeled or for others to look at her differently. Her husband told her not to answer but Tara did. The nurse on the other line confirmed that her d...

Oct 25, 2022•1 hr 22 min•Ep. 2

Ep. 1 Lindsay Head & Lincoln's 22q Story

When Lindsay went in for her 20 week ultrasound she had no idea that she was going to find out much more than just the gender of her third child. As Lindsay laid on the exam table in her paper gown, with her husband and two children by her side, the doctor informed them that their new baby boy had hypoplastic left heart syndrome (HLHS) and his odds of survival were not good. That baby is now 7 years old and his name is Lincoln. This was the beginning of their 22q journey. Throughout this episode...

Oct 18, 2022•1 hr 41 min

22q Podcast Trailer

Welcome to the 22q podcast. This is a space to share, learn and unite the 22q community and to remind all of us that we are not alone. We will be interviewing parents and caregivers who are raising 22q kiddos and share their struggles, joys and how they navigate this complex medical world. Hear from experts in the field of 22q, from doctors and educators and last but not least hear personal perspectives from individuals living with this syndrome. 22q11.2 deletion syndrome is a disorder caused by...

Sep 27, 2022•2 min

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