17: Charlotte House: Managing a Rare Form of Epilepsy
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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16: Steph Papas: Navigating An Extremely Rare Diagnosis of TARP Syndrome
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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15: Kelly Sadler: Living (and thriving) With A Limb Difference
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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14: Father’s Day Special – Ben Anderson: A Dad’s Experience of a Diagnosis of Down Syndrome
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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13: Megan Gillett: Enduring A Terminal Diagnosis
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
The SEND Mum Club is a parenting podcast with a difference. Made specifically for parents with children with all kinds of additional needs and/or disabilities. It's a place to share the joys and challenges of raising children with extra needs, with raw, honest conversations, designed to make you feel seen and heard on a journey none of us expected to be on.
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