Episodios

  • 17: Charlotte House: Managing a Rare Form of Epilepsy

    17: Charlotte House: Managing a Rare Form of Epilepsy
    Jul 7 2025
    My guest this week is Charlotte House, talking about her son Barnaby who has a rare form of epilepsy. Barnaby can have up to 70 seizures a day and we discuss how Charlotte manages that and what measures have had to be put in place to keep him safe. We talk about the on-going wait to find out what’s causing Barnaby’s seizures, how Charlotte finds researching everything helpful and she gives some great advice on how to keep track of information and appointments. We also discuss the mental toll of waiting for a big upcoming surgery and how she finds time for moments of self-care throughout the week.

    Tags: epilepsy, infantile spasms, brain surgery, SEN parenting
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    1 h y 2 m
  • 16: Steph Papas: Navigating An Extremely Rare Diagnosis of TARP Syndrome

    16: Steph Papas: Navigating An Extremely Rare Diagnosis of TARP Syndrome
    Jun 30 2025
    In this episode I speak to my first international guest, all the way from Australia! Steph Papas joins me to chat about her 2 year old son Archie who has the extremely rare genetic condition TARP syndrome. We discuss the emotional resilience needed to deal with a potentially life limiting diagnosis, the decision to delay telling more than a handful of people, and how difficult it is to find peer support with such a rare condition.

    Steph has such a beautiful outlook on how Archie’s diagnosis has changed her as a person, and the way in which it has made her live in the present instead of always planning ahead.

    Tags: TARP syndrome, rare genetic condition, SEN parenting, SEND parenting
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    39 m
  • 15: Kelly Sadler: Living (and thriving) With A Limb Difference

    15: Kelly Sadler: Living (and thriving) With A Limb Difference
    Jun 23 2025
    In this week’s episode I’m joined by Kelly Sadler to talk about her 10 year old son Kobi who was born with an upper limb difference – picked up at her 20 week scan. We discuss the need for medical professionals to be trained properly to deliver unexpected news and how she felt horribly anxious for the remainder of her pregnancy after receiving the diagnosis

    Kelly talks about how Kobi feels about his limb difference and what it holds him back from doing, but more importantly what he’s thriving at. We discuss representation in the media and how crucial that is, and Kobi’s breakthrough acting role in a huge Netflix hit show!

    Kelly mentions a couple of charities in this episode and you can find them below:

    www.reach.org.uk

    www.limbbofoundation.co.uk


    You can find the page Kelly runs for Kobi on Instagram here:

    www.instagram.com/k_o_b_i___s__/?hl=en

    Tags: limb difference, SEND, parenting
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    49 m
  • 14: Father’s Day Special – Ben Anderson: A Dad’s Experience of a Diagnosis of Down Syndrome

    14: Father’s Day Special – Ben Anderson: A Dad’s Experience of a Diagnosis of Down Syndrome
    Jun 15 2025
    In this (slightly chaotic) episode, I speak to my husband Ben to get his version of our story with our son Leo who has Down syndrome. Ben shares his initial feelings when we got Leo's diagnosis and the ongoing journey of acceptance since. We talk about letting family and friends in and accepting support, and the important role therapy has played in his journey. We also speak about our differing opinions on the benefits of peer support from within the SEND community and why that might be harder for dads to seek out.


    This episode is very kindly supported by Positive About Down Syndrome. You can access all kinds of support and information on their website here:

    www.positiveaboutdownsyndrome.co.uk

    Tags: SEN, SEN parenting, additional needs, Down syndrome
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    56 m
  • 13: Megan Gillett: Enduring A Terminal Diagnosis

    13: Megan Gillett: Enduring A Terminal Diagnosis
    Jun 9 2025
    In this episode I'm joined by Megan Gillett to chat about her daughter Nellie, who has the terminal genetic condition Metachromatic Leukodystrophy (MLD). Although this is obviously an emotional chat I was blown away by Megan's positive attitude to life despite Nellie's diagnosis. We speak about the grief of finding out Nellie's condition is terminal, the decision to have another baby, and the logistics of genetic testing including the options open to you if you find yourself in that position. Megan speaks about the emotional journey of parenting a child with a degenerative disease, and the importance of cherishing memories and how they're going about that as a family.

    You can find Megan on Instagram @megan_mumma_sunshine
    The Just Giving link we talk about in the episode to support Chestnut Tree House Children's Hospice is here:
    www.justgiving.com/page/rory-gillett-london-marathon

    Tags: MLD, SEND, parenting
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    48 m
  • 12: Abbie Bates: Advocating for Autism

    12: Abbie Bates: Advocating for Autism
    Jun 2 2025
    In this episode I'm joined by Abbie Bates talking about her daughter Harriet, who is nearly four years old and diagnosed with autism, global development delay, sensory processing disorder, and PICA. We talk about Harriet's journey to diagnosis, the differences between global development delay and learning disabilities, and the challenges of communication for non-verbal children. Abbie shares her experiences with an AAC device the importance of family support and understanding.
    You can find Abbie on socials @happyhandsharriet_asd
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    43 m
  • 11: Shona Larrigan: A Recent Diagnosis of Prader-Willi Syndrome

    11: Shona Larrigan: A Recent Diagnosis of Prader-Willi Syndrome
    May 26 2025
    In this episode I’m joined by Shona Larrigan, talking about her 8 month old baby Harry, who has Prader-Willi syndrome. We discuss the emotional impact of receiving a diagnosis, the importance of therapy and support, and the need to live in the present. Shona shares her experiences with public perception and the conversations surrounding Harry's condition, and her hope for the future with potential advances in medication. We also talk about trying to get the balance right between personal well-being and the desire to raise awareness, especially in the early days of your journey.

    This episode is released in Prader-Willi Awareness Month and if you need support with a diagnosis here are some helpful links including the one Shona mentions:

    Prader-Willi Association Ireland https://pwsai.ie/

    Prader-Willi Association UK https://www.pwsa.co.uk/

    Tags: Prader-Willi syndrome, new diagnosis, additional needs, new parent
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    1 h y 4 m
  • 10: Charlotte Hunt: Dealing with Divorce & Autism

    10: Charlotte Hunt: Dealing with Divorce & Autism
    May 19 2025
    This week’s guest is Charlotte Hunt who you might know from Instagram/TikTok as @twins_tides_and_autism_vibes. We talk about life with her sons Jude & Tommy who both have severe autism and how things have changed since Jude was born 17 years ago. Charlotte’s really honest about the breakdown of her marriage and how it felt navigating dating again as a SEND mum. We discuss introducing the boys to a new partner, going on to have (neurotypical) twin girls and how impactful their brothers’ autism has been on their family. We also talk about navigating friendships after having children with additional needs, and what you can do if you’re having struggles in that area.

    Tags: neurodiversity, autism, special needs, dating, divorce
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    1 h y 2 m