13 episodes

A podcast about the families all over the world who love someone with Rett Syndrome.

"One day you will tell your story of how you've overcome what you're going through now, and it will become part of someone else's survival guide"

Rett Syndrome is a rare genetic disorder with no current cure. As a parent of a daughter with Rett Syndrome, I wanted to talk to other parents to hear their stories and also give the newly diagnosed a positive and encouraging place to find comfort.

Check back towards October ,which is Rett Syndrome Awareness Month each year.

Remarkable: Life with Rett Syndrome Tracey Hoyng

    • Health & Fitness
    • 5.0 • 4 Ratings

A podcast about the families all over the world who love someone with Rett Syndrome.

"One day you will tell your story of how you've overcome what you're going through now, and it will become part of someone else's survival guide"

Rett Syndrome is a rare genetic disorder with no current cure. As a parent of a daughter with Rett Syndrome, I wanted to talk to other parents to hear their stories and also give the newly diagnosed a positive and encouraging place to find comfort.

Check back towards October ,which is Rett Syndrome Awareness Month each year.

    Kati Gray & Kendall (USA) – Creating Joy

    Kati Gray & Kendall (USA) – Creating Joy

    Kati's daughter Kendall is 4 and is living with Rett Syndrome. 

    This was my first talk with another Rett Syndrome family for the Remarkable podcast and I knew that I was about to learn so much from the other families with the same diagnosis as we have. 

    It's my joy to introduce you to their family today. 

    To find out more about this episode and links to the topics we discussed, please visit teamjovie.com/podcast.



    GET IN TOUCH!

    Let me know what you think about the Remarkable podcast and these amazing Rett Syndrome families. 

    FACEBOOK https://www.facebook.com/remarkablepodcast

    INSTAGRAM https://www.instagram.com/remarkablepodcast



    Thanks so much for listening, 

    Tracey 

    teamjovie.com


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    Send in a voice message: https://anchor.fm/remarkablepodcast/message

    • 49 min
    Caroline Dempster-Fitzpatrick & Charlotte (AUS) – Parenting, Divorce & Rett (Part 2)

    Caroline Dempster-Fitzpatrick & Charlotte (AUS) – Parenting, Divorce & Rett (Part 2)

    This is Part 2 of my talk with Caroline. 

    I know it took alot of courage to say what Caroline has said - but we know that there are other families out there going through the same challenges and the advice and encouragement from Caroline is so powerful. 

    Thank you again to Caroline for sharing your story. 

    To find out more about this episode and links to the topics we discussed, please visit teamjovie.com/podcast.



    GET IN TOUCH!

    Let me know what you think about the Remarkable podcast and these amazing Rett Syndrome families. 

    FACEBOOK https://www.facebook.com/remarkablepodcast

    INSTAGRAM https://www.instagram.com/remarkablepodcast



    Thanks so much for listening, 

    Tracey 

    teamjovie.com




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    Send in a voice message: https://anchor.fm/remarkablepodcast/message

    • 37 min
    Caroline Dempster-Fitzpatrick & Charlotte (AUS) – Parenting, Divorce & Rett (Part 1)

    Caroline Dempster-Fitzpatrick & Charlotte (AUS) – Parenting, Divorce & Rett (Part 1)

    Caroline and I have actually known each other for a few years but this was the time first we sat down to talk about how Rett Syndrome has effected her daughter Charlotte and how her divorce has changed their family dynamics. 

    This is Part 1 of our talk - I didn't want to edit out anything as we both felt that someone in the same position as Caroline would benefit from hearing what she had to say. 

    To find out more about this episode and links to the topics we discussed, please visit teamjovie.com/podcast.



    GET IN TOUCH!

    Let me know what you think about the Remarkable podcast and these amazing Rett Syndrome families. 

    FACEBOOK https://www.facebook.com/remarkablepodcast

    INSTAGRAM https://www.instagram.com/remarkablepodcast



    Thanks so much for listening, 

    Tracey 

    teamjovie.com




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    Send in a voice message: https://anchor.fm/remarkablepodcast/message

    • 1 hr 19 min
    Jodi Amiri & Avery (USA) – Rollercoasters & Rett

    Jodi Amiri & Avery (USA) – Rollercoasters & Rett

    Jodi's 7 year old daughter Avery has Rett Syndrome, but that was not her first diagnosis. 

    After talking with many families, it was apparent that alot of us experience receiving an Autism diagnosis before we reach the correct diagnosis of Rett.

    I loved hearing about how funny and fun Avery is and I loved hearing about what inspires Jodi to do more for Avery despite Rett Syndrome. 

    To find out more about this episode and links to the topics we discussed, please visit teamjovie.com/podcast.



    GET IN TOUCH!

    Let me know what you think about the Remarkable podcast and these amazing Rett Syndrome families. 

    FACEBOOK https://www.facebook.com/remarkablepodcast

    INSTAGRAM https://www.instagram.com/remarkablepodcast



    Thanks so much for listening, 

    Tracey 

    teamjovie.com




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    Send in a voice message: https://anchor.fm/remarkablepodcast/message

    • 59 min
    Cora Foster & Olivia and Charlotte (USA) – Twinning with Rett Syndrome

    Cora Foster & Olivia and Charlotte (USA) – Twinning with Rett Syndrome

    Cora's 4 year old twins Charlie and Olivia both have Rett Syndrome. 

    Cora keeps an amazing account of their Rett Syndrome journey on their Instagram and it was great to sit down and have a talk about how Rett effects both girls. We also talked a bit about mental health and mindset, and how the girls are with their new baby sister Madeline. 

    To find out more about this episode and links to the topics we discussed, please visit teamjovie.com/podcast.



    GET IN TOUCH!

    Let me know what you think about the Remarkable podcast and these amazing Rett Syndrome families. 

    FACEBOOK https://www.facebook.com/remarkablepodcast

    INSTAGRAM https://www.instagram.com/remarkablepodcast



    Thanks so much for listening, 

    Tracey 

    teamjovie.com




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    Send in a voice message: https://anchor.fm/remarkablepodcast/message

    • 51 min
    Jo Huxley & Megan (AUS) – Life With A Late Diagnosis

    Jo Huxley & Megan (AUS) – Life With A Late Diagnosis

    Jo's Rett Syndrome story is a little different to what we're typically used to hearing - her daughter Megan is currently 15 and wasn't diagnosed until she was 12, just 3 years ago. 

    We had a great talk about how a later diagnosis of Rett Syndrome has effected them, and how Megan is doing today. 

    To find out more about this episode and links to the topics we discussed, please visit teamjovie.com/podcast.



    GET IN TOUCH!

    Let me know what you think about the Remarkable podcast and these amazing Rett Syndrome families. 

    FACEBOOK https://www.facebook.com/remarkablepodcast

    INSTAGRAM https://www.instagram.com/remarkablepodcast



    Thanks so much for listening, 

    Tracey 

    teamjovie.com


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    Send in a voice message: https://anchor.fm/remarkablepodcast/message

    • 1 hr 2 min

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