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Ciara Burnside joins me in this episode to talk about her 6 month old son Ralph who has Epidermolysis Bullosa, otherwise known as EB or Butterfly Skin. She explains what that is, what it means, and how her health anxiety added an extra layer of difficulty onto dealing with Ralph’s diagnosis. Ciara talks about the struggle to trust anyone enough to look after Ralph due to how fragile his skin is, and how the condition is so rare even medical professionals have struggled to handle in in the right way.   Ciara is on a mission to raise awareness of EB and is also campaigning for more research into the condition. You can sign the petitions she talks about in the episode here: https://petition.parliament.uk/petitions/775393#main-content (UK only) https://www.change.org/p/fund-a-future-for-people-living-with-epidermolysis-bullosa-eb (worldwide) You can find Ciara on socials here: Instagram - @ciaraburnsidex TikTok - @ciaraburnside  The charity Ciara mentions is here: https://www.debra.org.uk/?gad_source=1&gad_campaignid=22557552939&gbraid=0AAAAADil0qsdhFLsFLoFVsqQFpd0rMi9h&gclid=CjwKCAjwifjVBhBKEiwAYx4K9BB3z8MnwM5nVtoPMNEEG9nw3Npj2622cAtkmXlDyucCqnfOeRGOFBoCMagQAvD_BwE

Kelsey Reid is my first guest back after the summer and it’s perfect timing because she’s on to talk about her decision to home educate her daughters Maizie & Maddie. We discuss what that actually looks like and the difficult road that led to that decision. We also talk about how differently the girls’ autism presents and I find out Kelsey’s thoughts on *that Telegraph article.

It’s the September reset and I’m back with a little post summer update and asking what you want to hear on the podcast moving forward. Get in touch via Instagram @thesendmumclub

Amy Draper is my guest this week talking about her 18 month old son Donnie. Amy was told at 13 weeks pregnant there was a high chance her baby had Down syndrome but when he was born it was clear it was something else. After waiting a year for full genetics results Donnie was diagnosed with the very rare Aarskog-Scott syndrome. We talk about how it felt to be expecting one diagnosis only to receive a different one, the lack of support and information when dealing with such a rare syndrome, and why Amy feels in limbo without a clear medical plan to move forwards with.  The charity Amy mentions in this episode is here:www.aarskogsyndromefoundation.co.uk Trigger warning: we discuss baby loss in the episode so please listen with care

Greer Jones joins me to chat about her eldest child who is 7 and has autism & ADHD (Greer chooses not to share his name publicly). We talk about her difficult route to diagnosis and how professionals made her feel like her son’s behaviour was down to her failing as a parent, leading to thoughts of suicide. We discuss how him being diagnosed with ADHD led to her own diagnosis and the huge gap between the average age males and females are when they get diagnosed – this stat blew my mind. Greer also talks a lot about overwhelm and the strategies she’s put in place to manage it.  You can find Greer on socials @theunfinishedidea

I couldn’t not speak on this subject as it’s sparked conversations and judgements that have been extremely hurtful to the Down syndrome community. Not the choice the couple made, but they statement they released and the meaning behind it.

My friend Sam Ofoegbu is my guest this week, talking about her little boy Theo who’s 4. Theo has Down syndrome and needed heart surgery after he was born. He is also on the ASD pathway. We discuss parenting a child with additional needs without a partner, how Sam coped with Theo’s surgery, why she is making the decision to home educate and what she thinks that will look like for them.

Dora Garcia joins me on this episode to chat about her 9 year old son Matteo who has Autism and ADHD. We discuss Dora being in denial before the diagnosis and how she feels perceptions changed after it. We talk about the importance of taking pockets of time for yourself to recharge and making sure you prioritise what’s actually important rather than trying to do everything. Dora discusses how she travels all over the world with Matteo as a single mum and what she’s put in place to make sure it goes as well as possible.   You can follow Dora on Instagram @thetravelholicmum

Amelia Christie is my guest this week, talking about her 5 year old son Oliver who has congenital heart disease, cerebral palsy, global development delay and is tube fed. We talk about how Amelia coped with lengthy stays in hospital for Oliver’s surgeries, lessons she learned and things she’s now put in place to make hospital stays slightly easier.  We talk about the importance of self-care while your child is ill but how hard that is to actually put into practice, and ways in which friends and family can support you.  Amelia also talks about an amazing experience Oliver has just had being named the honorary 35th runner in the 2026 Grand National.  You can find Amelia on Instagram @oliver_chdbaby

In this episode I talk to Christian Laing – co-founder of Stand Out Socks – about what life was like growing up with a sibling with Down syndrome. We discuss how that impacted Christian’s upbringing, how involved Ross was (and is) with Christian’s friends, and what Christian’s thoughts are now looking back as an adult.  Christian, Ross & Christian’s partner Natalie founded Stand Out Socks (you may have seen them on Dragon’s Den) because Ross was struggling to find paid employment. Christian talks about how many people with additional needs end up working for free, or even paying to work and why it’s so important that changes. All the people that work at Stand Out Socks have Down syndrome and all of them are paid for every hour they work. I was absolutely shocked to learn how rare that is.  You can shop the socks and find out more at www.standoutsocks.co.uk and follow them on Instagram @standoutsocksuk

I’m back after a little break over Easter and Vickie Tanner is my guest, talking about her 7 year old daughter Elsie who has Autism, sleep apnoea, epilepsy and is a wheelchair user. We discuss toilet training, milestones, Vickie’s own (very recent) diagnosis of autism, and the impact of SEN parenting on your mental health. Vickie shares her journey with Elsie on Instagram @elsiesworld__

This episode marks a year of The SEND Mum Club podcast. Thank you so much for listening! Liz Day is my guest this week, talking about her 4 year old son Henry who has the CASK gene mutation, an extremely rare genetic condition that affects boys much more severely than girls. We discuss the bleak outcome they were told to expect in terms of life expectancy and how Henry has already proved the doctors wrong. Liz talks about going back to work and how she manages that alongside Henry’s needs. We discuss how hard it is to give over some of Henry’s care to carers and the difficulty in finding peer support when his condition is so rare in boys. Liz mentions the Unique charity as a good resource if you’d like to learn more about Henry’s condition https://rarechromo.org/disorder-guides/You can find Liz on Instagram @medical_mumma_kickingcask

Founder and CEO of Down Syndrome UK Nicola Enoch joins be this week for a special episode in the run up to World Down Syndrome Day on March 21st. We discuss Nicola’s journey as mum to Tom who is now 21 as well as her work with Positive About Down Syndrome and why it’s so important. Nicola is extremely honest about her feelings when Tom was born in this chat, as well as how she feels about their life now. We discuss what led Nicola to set up PADS and the challenges families are facing who access their resources. TW: We discuss termination after diagnosis in this episode so listen with caution if you feel that may be triggering for you.  You can find PADS here: https://downsyndromeuk.co.uk/

It’s a special episode this week because I’ve got a couple on! Clare & Carl Graham join me to talk about their daughter Odette who has Down syndrome and cerebral palsy. We talk about the reality of how long acceptance can take, receiving a second diagnosis, comparison on social media and the impact all of that can have on your mental health. Clare & Carl are both really open about how they’ve struggled mentally and what therapy looked like for both of them.  Carl mentions men’s mental health charity Sean’s Place in this episode who do incredible work with men living in Liverpool and Sefton. You can find them here: https://seansplace.org.uk/You can find Carl on social media here: Instagram: @carlinstagraham TikTok: @carlgsendad

My guest this week is a special one because she’s one of my besties! Ani and I have been friends for nearly 22 years and she was one of my bridesmaids when she was pregnant with her daughter Melyn. After Melyn was born Ani and her partner found out she was deaf. In this episode we talk about the importance of allowing yourself to sit in the grief of a diagnosis, self preservation when researching a diagnosis, and the decision to go ahead with surgery for cochlear implants and what that now means for Melyn. Ani is a (fabulous) musician and she also discusses how she’s making her music and performances more inclusive for the deaf community. You can find out all about Ani’s music - and buy some merch – here: https://aniglass.bandcamp.com/musicInstagram: @ani_glass