22q Podcast

Courtney and her husband were at one of her routine high risk pregnancy OBGYN appointments when the doctor began measuring all of her babies features. The doctor then confirmed that they were pretty certain that their child had 22q. At the time Courtney and her husband were terrified because this babies was their rainbow baby. Courtney had had four miscarriages prior to this one so they wanted to...

Peter Mason lives his life to the beat of his own drum. His love for Drum Corps. runs deep within his family and he is also an artist, culinary student, foodie and lover of all board games. He shares his optimistic outlook on life and what it is like living with 22q. He has had over 40 surgeries to date, including open heart surgery at 9 years old. He is a 22q warrior and I am honored to introduce...

The way that Tiler found out about her daughter, Tanner's 22q diagnosis is incredible. Two days after Tanner was born, Tiler was sitting next to her daughters crib in the NICU when a geneticist walks by and stopped to take a better look. She introduced herself and said that she had just returned from a conference overseas for DiGeorge syndrome. She informed Tiler that her baby had many of the...

Kyle was taking a test in school when all of a sudden his nose started to bleed. He tried to stop it but no matter what he did it wouldn't stop. He was then rushed to the ER where he over heard his mother mention to the doctor that her son had 22q. He looked at her and asked what that was and that is when she said, it is a genetic disorder that you have. On todays episode I am honored to intro...

Lindsey Garcia was driving her two year old daughter home when she received a phone call from her geneticist. They confirmed that the baby boy, that was still growing inside of her had 22q deletion syndrome. Through waterfall tears she made it home and was overwhelmed with sadness. As a type A planner, she hadn't prepared, nor could prepare for this sort of diagnosis and it was terrifying at t...

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 paren...

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 yours...

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...

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 thi...

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-...

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...

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 shoc...

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 dismi...

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 som...

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 differentl...

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 yea...

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 perspe...