Just a quick chat with your hosts Lauren and Rina on some of their favourite bits from series 4 and a reminder to get in touch with the F**king Normal team if you have any ideas for future episode topics for the next series. Thank you for listening and supporting the podcast . We promise we will be back with more episodes very soon!

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In this week’s episode, Lauren and Rina sit down with Brandi Amiss-Towler as she shares the extraordinary story of her son Caspian’s birth, the challenges of his early days, and how her experiences have driven her to retrain and pursue a career in law. Brandi offers a candid and raw account of the early days, navigating a complex medical journey with a large number of professionals and an extended hospital stay. She also reflects on what motivated her to take on her impressive journey to courtroom advocacy and shares some wise words of advice for other parents. What an incredible women!

Content Warnings

Strong Language warning

Prenatal diagnosis

Infant death

Birth stories

Guest Biography

Brandi Amiss-Towler is originally from Kansas in the USA, but has called London her home since 2004. She is mother to two boys, her eldest is now 23 and her youngest, Caspian, is five. Caspian was born with a rare teratoma in his jaw. He has had significant surgeries, a tracheostomy and is PEG-fed. From the start, Brandi has been a fierce advocate for ensuring his needs are met. A month before Caspian was discharged from the hospital at 20 months old, she began law school to train as a barrister. Now, having been Called to the Bar, she practices social security law.

Useful resources

Teratoma - Wikipedia

Martha's Rule: says that where a parent questions the professional opinion of a professional, they have a right to request a review by a separate team

https://www.england.nhs.uk/patient-safety/marthas-rule/

Council for Disabled Children

https://councilfordisabledchildren.org.uk/resources/all-resources

Caudwell Children

https://www.caudwellchildren.com/changing-lives/how-we-can-help/

Provides services, funding, and training for families and children

Mencap

https://www.mencap.org.uk/

Provides advice on benefits, housing, health and education. I've always found them to be very knowledgeable.

Disability Rights UK

www.disabilityrightsuk.org

Produces the Disability Rights Handbook which provides guidance on disability benefits and social welfare law, also provides advice and other resources

Disability Action-There is a disability hub in most boroughs. Just google Disability Action and see if there is one in your borough.

Scope

https://www.scope.org.uk/advice-and-support

Provides services, advice and support for disabled children and their families

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In this week’s episode, Lauren and Rina chat with museum curator and researcher Cat Troiano. Cat is mother to two young daughters, Stella (4) and Petra (almost 3). Stella has 5p minus syndrome, also known as Cri du Chat syndrome. Growing up in a multilingual family with a strong focus on language and linguistics, Cat’s perspective was profoundly transformed by her fight to meet Stella’s communication needs. This thought-provoking conversation delves into Cat’s journey, the challenges she faced and how she advocated to ensure Stella could more easily interact with the world around her.

Content Warnings

Very strong Language warning

Diagnosis

Guest Biography

Cat lives in London with her husband, Giorgio, and their two daughters Stella and Petra. Cat works as Curator of Photography at the V&A, and Giorgio manages the design team at a lighting manufacturing company. Professionally, Cat comes from a research background, curating exhibitions and publishing or presenting regularly about photography in its historical and contemporary environments. She has significant experience working in complex institutions, and expertise in institutional policy and practice in the cultural sector. Incidentally, this armed her with a skill set that has proven particularly useful in advocating for Stella – who was born with a rare genetic syndrome – and navigating the paperwork, systems and therapies that help her thrive. Catherine has always been interested in language and linguistics, and she is forever grateful to Stella for upending her world view about language and communication.

Useful resources

• fivepminus.org - 5p- Society. This is the American group (the biggest one) relating to the syndrome
• Documentary by parent to child with 5p- A sweet mini-doc a filmmaker (also parent to CdCS child) made for a benefit concert in 2012.
• Raising a rare girl book - Heather Lanier's book 'Raising a Rare Girl' that Cat mentioned.
• Therarelife.ep-166-nonspeaking-child-longing-to-access-their-inner-world-give-them-medical-autonomy-w-suzi-boubion - Podcast episode referenced by Cat in which Suzy Boubion talks about her non-speaking child.

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