Let's Talk About Kidney Kids
By Jill Brown
Host Jill Brown, MPA - Executive Director for NW Kidney Kids
Developed by NW Kidney Kids - a 501(c)3 serving children with kidney disease and their families since 2006. More info and get involved: www.nwkidneykids.org
Let's Talk About Kidney KidsJan 30, 2023
Talking with Maggie about her kidney disease journey
Today I welcome Maggie MacKenzie to Let's Talk About Kidney Kids. Maggie talks about being diagnosed with ESRD as she graduates college. She talks about the struggles of coping with her new disease and how having many different support people at various times helped her to positively cope and manage her disease.
One Parent Story - Organ Donation & Connecting with Donor Family
April is Donate Life Month - a month that we bring awareness to organ, eye and tissue donation.
Todays guest is Naomi Mauro, a parent of child, Ethan, born into end stage renal disease. She is also the mom to Lucas and Mackenzie. She lives in the country in SW Washington with her husband, Chad. Today we talk a little bit about Ethan journey to transplant but the focus of todays episode is on organ donation. Naomi and her family experience deciding to pursue transplant as a treatment, awaiting for the call for a deceased donor and connecting with the family five years after transplant.
You can follow along with Ethan and the Mauro Family story through their facebook or instagram page.
According to Donate Life America, 1,900 children under the age of 18 waiting for a variety of organs, and more than 25% of them are under 5 years old. With the most children between 6-18 years old awaiting for a kidney transplant from a Deceased Donor, many more will never be listed as go strait to transplant with a Living Donor.. (https://www.donatelife.net/types-of-donation/pediatric-donation).
In this episode we also talk about Kidney Kids Connect, a program through NW Kidney Kids in which kidney kids 8-13 years old come together once a month on zoom to connect with one another. If you are interested in learning more about Kidney Kids Connect visit www.nwkidneykids.org or call/text (503) 893-5671 email info@nwkidneykids.org.
Dakota talks about VACTERL Association and waiting 16 years for a transplant
Dakota Watson is 20 years and diagnosed with VACTERL Association at birth. He has spent his whole life living with this syndrome and the medical complications that come with it. At 16 years old he received his first transplant.
The information in this episode is from the perspective of the interviewee and their own understanding of their disease and the medical terms that come with managing that disease. Please discuss any treatments, conditions with your own medical team.
This podcast is produced by NW Kidney Kids, a 501(c)3 serving children with CKD since 2006. To get more information about programs please visit www.nwkidneykids.org. Also, find us on social @nwkidneykids
The podcast Host is Jill Brown, we can connect at jill@nwkidneykids.org, LinkedIn, or Twitter.
More Information on VATERS Syndrome (AKA VACTERL Association): https://rarediseases.org/rare-diseases/vacterl-association/
Benefits of Mentorship for Kidney Kids
Today's Guest is Emilee Kerper, an MSW candidate that has been working to develop curriculum and activities for the Group Support Program for Kidney Kids and Siblings 8-13 and kicking off a Paired Mentoring & Group Support in February for 13-18 years old.
Sign up for Mentoring & Support Groups for Kidney Kids 8-18 and Siblings 8-13 on our website.