Remarkable: Life with Rett Syndrome

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.

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

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. 

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. 

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. 

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. 

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. 

Justine's 2 year old son William has Rett Syndrome - yes boys can have Rett Syndrome too! 

It was such a great opportunity to sit down with Justine and talk about her William, how Rett Syndrome has effected him and how they have dealt with getting such a rare diagnosis. 

Part 2 of my chat with Mel for the Remarkable podcast. 

Again, we had such a great time chatting about everything they've experienced with Rett Syndrome. I didn't know much about clinical trials for Rett Syndrome beforehand, so I'm so glad to have spent the time with Mel and soak in the knowledge she has. 

Mel's daughter Katelin is 26 and living with Rett Syndrome. 

It was such an honour to sit down with Mel not only once, but twice, for the podcast. I openly admit that I have alot of learning to do, so talking with Mel was such a great learning experience for me. 

We talk about a range of things - from her writing, to Atypical Rett Syndrome, to the clinical trials they were involved in. Mel's blog Trail to a Texas Trial is an amazing recount of everything they've experienced with Rett Syndrome and with the Trofinetide trial. 

This is Part 1 of our chat! 

Dana is the wonderful mum to 6 year old Maika, who is living with Rett Syndrome. In this episode, we talked about what it's been like since their diagnosis, how it's effected her twin brother Marley and having another baby after a Rett Syndrome diagnosis. 

Naomi is the mum to the beautiful 2 year old Olivia, who was diagnosed with Rett Syndrome in May 2019. It was a great pleasure to talk with Naomi about how they are managing life with a new diagnosis of Rett Syndrome. 

Naomi had an amazing amount of info to share with you all! 

Happy Rett Syndrome Awareness Month 2019! 

I am so proud to introduce you to some Remarkable Rett Syndrome families during October 2019 - it's been such a great learning experience for me and I know their stories will bring you some inspiration and comfort, especially if you are a Rett Syndrome family also. 

Just to quickly introduce myself - my name is Tracey and my 10 year old daughter Jovie has Rett Syndrome. 

In this episode, I wanted to briefly describe what Rett Syndrome is and where you can go for more professional information and support. If you are worried about your child, please always seek the proper advice and care from your doctor. 

Episodes will be released twice a week during October for Rett Syndrome Awareness Month - please get in touch and let me know what you think of each episode. Consider sharing the podcast via Facebook and Instagram - help us spread the word about Rett Syndrome. 

Welcome to Remarkable - a podcast about the families all over the world, who love someone with Rett Syndrome.  

Rett Syndrome is a rare neurodevelopmental, genetic disorder that is caused by mutations on the X chromosome on a gene called MECP2. It causes problems in brain function, and that in turn effects every part of the body - from breathing, to walking, talking, digestion and beyong. There is no current cure for Rett Syndrome. 

I will be working with some amazing Rett Syndrome families to bring you the rest of the podcast series closer to October 2019, so I hope you stick around - tell your friends - subscribe and keep in touch. Awareness is built by the community around us, so I thank you for listening and we will be back soon with stories about life with Rett Syndrome.