An Xtra Ordinary Journey

Jo was a speech and language therapist for many years and has given up her career to concentrate on being a mummy to Lucy who has a very rare genetic disorder called Emanuel Syndrome. She is passionate about AAC (augmentative and alternative communication) and writes a blog where she shares how they as a family use different communication aids and also lots of useful,practical infomation other parents can use. We chat about their various family hobbies, including,girl guiding, running, camping, traveling and festivals and how they help Lucy access them all. Links Jo mentions in the episode Communication Matters https://www.communicationmatters.org.uk/ Safe Place Beds https://www.safeplacebedseu.com/ Underneath the Stars Festival https://underneaththestarsfest.co.uk/ Mummy vs AAC blog https://www.mummyvsaac.blog/

Gareth is William's father and founder of Wilbo's blends. The first pre packaged, ready made blended food designed for people who are tube fed, available in the UK. We chat about the years of research, trials and experts it has taken to get the idea put into reality. The familes he has met during this journey have continued to inspire him to develop new products and to use their platform to give practical advice, which they hope to develop more in the future. We also discuss enjoying days out as a family, with a child with complex needs and how talking to other families in a similar postion can be invaluable. You can find the blended diet UK Facebook group as discussed in this episode here https://www.facebook.com/groups/278702472183551/ You can find out more about Wilbo's blends from their website https://wilbosblends.co.uk/ or follow them on social media

Tracy and her family received a life changing diagnosis for their eldest child Ellis last year. During long periods in hospital away from home, while Ellis was receiving the latest stem cell treatment they came up with the idea of starting a charity to help other families going through similar experiences. The Ellis Lake Foundation is raising funds to give essential packs to families who find themselves in hospital with their children, sometimes far from home. On the podcast Tracy tells us their story from diagnosis to where they are now. We discuss how to cope with long hospital stays and advice for friends/family who want to support but are unsure how. You can donate to the charity here https://ellislakefoundation.co.uk

A little bit about our family and why I started this podcast.

What's this all about then?