https://youtu.be/8PakE77xcZU?si=ia2PdOTXc1tVM84t
Mikey is a talented drummer, Giant's Baseball fan and is an adult living with 22q. He shares what is challenging about his 22q diagnosis.
Listen to the 22q Podcast wherever you like to listen to podcasts. Subscribe, like and share to help raise awareness about 22q Deletion Syndrome.
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Ep. 31 Meet Johan, a sweet 15 year old boy with 22q who is searching for his forever family - with Brady Murray
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
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 [email protected]. 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.
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RODS Heroes
https://podcasters.spotify.com/pod/show/22qpodcast/episodes/Ep--31-Meet-Johan--a-sweet-15-year-old-boy-with-22q-who-is-searching-for-his-forever-family---with-Brady-Murray-e2bcmdk
Jen was listening to the morning rounds when a doctor happened to mention that the genetics team found an abnormality in her daughter, Hazel's 22nd chromosome. After waiting all day Shannon finally asked a nurse to page the genetics team to have someone explain what this 22q deletion syndrome meant for her daughter. She shares how she and her husband received the news that their daughter had 22q.
Hazel also had esophageal atresia, which was repaired at Boston Children's Hospital, using the Foker Process. John Foker, MD, PhD, a pediatric, general and cardiac surgeon from the University of Minnesota, developed a technique to stimulate growth of the upper and lower ends of the esophagus to treat cases of long-gap esophageal atresia. This technique, known as the Foker process, is a revolutionary procedure that encourages natural growth and strengthening of a child's existing esophagus, resulting in an esophagus that works so well that it is often nearly indistinguishable from one that developed normally.
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#esophagealatresiawarrior
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22q Podcast
Boston Children’s Hospital
22q Podcast • Ep. 29 Robin Gramke
Robin never knew she had 22q until her daughters diagnosis. She shares her story of quilt, grief and joy on the latest episode of the 22q Podcast.
Instagram LIVE event on Sunday Agust 13, 2023 with 22q mom and author, Rachel Hibbard @rshibbard she will be sharing her children’s book, “Just Jen, living with invisible differences.”
Join us at @22q.podcast
