Myhre & Me Podcast
Welcome to the Myhre & Me podcast series.
We chat to the Myhre Syndrome Community on their path to a diagnosis, how living with Myhre affects their lives and how they navigate the many symptoms assosiated with this ultra rare genetic condition.
Thank you so much to everyone who took part, we’re incredibly proud of the entire Myhre community as we all journey through the up’s and down’s together.
Look out for more episodes coming soon!
Episode 1 - Mady Blouin talks about her life and Iolani's journey with Myhre syndrome, including seven open heart surgeries.
Episode 2 - Katy Matthews joins us as we talk through everything from our reaction to the diagnosis, how it’s changed many perspectives and Katy’s idea for more rare disease support.
Episode 3 - Ines White and her daughter Katie, who has Myhre join us this week. We talk a little about Katie’s experience at school but Ines and Katie wanted to add that Katie graduated High School in 2016 with her peers, with a diploma and a 3.5 GPA. She worked very hard, took every quiz, every exam and did all the homework. She’s even taken some college classes and gotten straight A’s. Katie continues to be an inspiration as you’ll hear!
Episode 4 - Deleena Therien from Canada talks to us about Oliver and Ivy, her three year old twins and how Ivy’s diagnosis in January 2020 came after years of searching for answers.
Episode 5 - Michelle Smith from Texas talks with us about her youngest daughter Mila, supporting her husband Justin in setting up the Myhre Syndrome Foundation and how her faith has helped and continues to guide their family.
Episode 6 - Gustavo Sabato lives in Argentina with his family and we chat about Chiara, his 10-year-old daughter who has Myhre and discuss everything from their diagnosis journey, what therapies Chiara enjoys and her love of swimming.
Episode 7 - Lee Becknell from Atlanta, USA joins us today as we chat through Alex’s diagnosis, who is seven. You’ll hear about Alex’s love of singing and how Lee set up her own local Facebook group for parent’s of special needs children.
Episode 8 - Destiny Puente from Chicago, USA chats with us about Ty, her son, who is 10 years old as well as Splash his support dog, giving us details on exactly what that entails!
Episode 9 - in our finale of this season, we hear from Holli Dillard-Cranfill who has Myhre. Holli wasn’t diagnosed until she was in her 30’s but this has not stopped her adopting her two sons, getting her second degree, retraining in special education, and living life to the full. Don’t miss this one, Holli is an inspiration.