The First Sixteen Years: The Heran Family Interview

Kathy Angkustsiri, M.D., a UC Davis MIND Institute Developmental Pediatrician who works with 22q11.2 deletion syndrome patients, interviews Carrie and Kelley (16 years old) Heran who provide a candid discussion about what it's like living with Chromosome 22q11.2 Deletion Syndrome.

[@kentuckylady2990]

You can see the pride in her mother’s face and hear it in her voice.

[@19th-Nervous-Breakdown]

I'm so impressed by this marvelous mother and her wonderful daughter. It's a great success story. 💪

[@bumpsandbliss]

This mother is just amazing!!! I’d sure love to get to know her.

[@carolynkuks7659]

This mother and daughter are inspirations!!!!.

[@ZafranAsmy]

I love this mother. such a huge inspiration. thank you for sharing your story. This gives so much confidence to raise my child who has 22q.

[@blackwood5851]

Thanks for this video, I'm a medical student and I have to do a presentation about 22q11 deletion syndrome so it's really helpful to have the insight of a person with the syndrome

[@beefykeith48]

i hope the presentation went well! it's so amazing when med students really focus in on the testimonies from the people who are actually living with the conditions being studied.

[@SunshineSG881]

Thanks for sharing. It is amazing that you share so positively. You and your daughter are very strong and beautiful. My daughter has 22q and had multiple operations too so I totally understand your journey. I wish for you and her the best and all the strengths.

[@peacenow42]

I am a retired pediatric RN. Believe me when I say almost everyone who uses the abbreviation "FLK" thinks your child is perfectly beautiful. You cannot work with these babies and kids and families without having a profound respect for every child. And yes, I think your daughter is beautiful also.

[@carolynkuks7659]

Ï agree, however, sometimes they would say "elfin"ears. I don't like it but that's nothing compared to every other incredible things they did for my daughter.

[@peacenow42]

@@carolynkuks7659 lovely. Oh, I wanted to add, same for my dear daughter. At 35 she is battling (and succeeding) very bad breast cancer. SO proud of her and so happy with her health care team. No way to thank them enough. hope yours is doing well also.

[@kelli5745]

Hi Iam 36 and I have 22q to and so does my 13 yr old daughter.

[@miss.ttbagley-jones1584]

I have 22q11.2

[@NightOwlVisuals]

Me too, 30 year old video producer living in Boston!

[@angiea8022]

Something isn't right about this mother. (ALL babies are born blue)

[@simjim6]

No, there is nothing wrong with her, and babies are not usually born "cobalt blue" - like those with heart defects like Tetralogy of Fallot.