What we’re into

Podcast Review

The Rare Life Podcast

The Rare Life Podcast was launched on the 29th May 2020, a date chosen because it was also the second birthday of Kimball, the son of the podcast creator and host Madeline Cheney. As the mother of two children, it was the birth of her son that unexpectedly changed everything and set Madeline and her family on their rare journey.

The podcast is now into its eighth season, with over 139 episodes aired to date, and deals with a huge range of topics relevant to the world of rare medical conditions. The episodes often include guest speakers, who bring their own experiences, insights or professional knowledge and offer interesting perspectives on the topics at hand. Whilst the podcast is an American one, and some of the more specific details about medical care might not apply to those living elsewhere, the experiences and voices still resonate. It is, to borrow Madeline’s words directly, “a podcast that supports and loves parents of kiddos with rare diagnoses and conditions… We talk about the hard stuff, which is actually so uplifting, and validating.”

If you’ve not yet listened to any of the Rare Life podcasts, we highly recommend that you do! You might laugh and cry, and you will almost certainly find stories that echo your life and your experiences, which can be so important for those in the rare community to help us feel seen and heard.

BOOK REVIEW

Twelve Moons: A Year Under a Shared Sky by Caro Giles

Following the lunar calendar this beautiful and moving book tracks the ever-present guiding moon over the course of a year. Written as a memoir, Twelve Moons introduces us to the lives of Caro and her four daughters: The Mermaid, The Whirlwind, The Caulbearer and The Littlest One.

Set in Northumberland their stories are told against the backdrop of their surrounding landscape, of the wild peaks and hills, of windswept beaches, of the surging sea, but also against the domesticity of a family home overlooking rooftops, a small front garden and an alleyway full of washing. The book is many things, it is a book about the challenges of being a single mother, about the realities of mothering, and a mother’s love. It is also about what it means to become a parent carer whilst trying to navigate the difficulties and complexities of healing your newly severed family. The story covers mental health, living with anxiety and the episodes of acute obsessive compulsive disorder (OCD) it can bring. At its heart it is about the pain of watching your child fight to live, to try to feel safe in a world that feels terrifying, and in which they drift unmoored and isolated, feeling cast off by their difference. It reflects on the challenges of fighting for the right diagnosis for your child, and the care and educational support that it promises to unlock for them. It describes the sheer overwhelm that can come from dealing with multiple professionals who are there to help you, but in truth only seem to make you feel judged and alone.

What I loved most about this book is that at times it felt like a celebration of nature, and the healing and restorative power of the sea, and at other times like a deeply personal insight into the intimate heart of a family, of a mother always forging forwards with her tribe of girls around her.

Visit Caro Giles’ Instagram page

Film Review

Invisible Interviews, the new NPUK (Niemann-Pick UK) film series

We have previously reviewed the wonderful animated short film ‘Invisible Manners,’ which was released back in 2021, so we loved getting the chance to watch the ‘Invisible Interviews’ documentary series, created as a companion piece to the first film. Written and directed by John Lee Taggart, the award-winning writer and director behind the first film, he has once again worked with NPUK to create four individual short films, each narrated by the actress Sheila Reid, and featuring a beautiful animated opening sequence created by the animator of the first film, Lingxi Zhang.

The series starts with Graham’s story, followed in turn by Nadia, then Hollie and concludes with Alec’s story. Each film tells not only their story but touches on the lives of their loved ones too. Every interview is conducted in a lovely, relaxed, friendly and accessible way, and the finished films include those all-too-real snippets where things don’t go quite to plan; a mobile ringing mid-question, a dog intent on inspecting the camera just a little bit more closely, so the overall effect is to make what could be heartbreakingly sad conversations a joy to watch. Despite the pain of bereavement, the fear of what’s to come, the honest and sometimes brutal insights into what a life lived with Niemann-Pick type 2 can look like, this is ultimately an uplifting series, in equal parts entertaining and inspiring.

You can watch them here

Book Review

Leg: The Story of a Limb and the Boy Who Grew from It by Greg Marshall

Greg Marshall grew up with a limp, never knowing that at 18 months old he had actually been diagnosed with cerebral palsy. Instead, his limp was explained to him as ‘tight tendons’ by his parents who always encouraged him to do his best and to never give up. It was only when he was almost 30 years that he discovered his diagnosis.

This brilliant memoir, which is written with humour, poignancy and honesty, tells the story of a boy and his family growing up. Greg’s family is far from typical; his mum has non-Hodgkins’s lymphoma, his dad has ALS (amyotrophic lateral sclerosis, also known as motor neurone disease), he has four siblings, a limp, and is also hiding a secret from the world, that he is gay. So many of these things might be considered difficult, or lifechanging, yet for the Marshall family it was simply their life.

What shines throughout the book is love. Love and admiration for his family, particularly his parents, and the love that is given in caring for his father. The grief and loss after his father’s death is captured beautifully. In places the book is quite graphic, dealing with openness and honesty with sex and other bodily functions. Ultimately the book touches on life, love, loss and the grittiness that is life, bound throughout by Greg’s humour which gives rise to many joyful, laugh out loud moments. Visit Greg Marshall’s