
One in 80 Million: What Happens When Both Parents Carry the Same Rare Gene?
Everything Changed with Rosie FawehimiShow Notes
✨ This episode is sponsored by RevitaLash Cosmetics. Rosie has partnered with RevitaLash, the original lash conditioning brand, to bring you a special offer. Use code ROSIE20 for 20% off your order at revitalash.co.uk. Thank you to RevitaLash for supporting Everything Changed.
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When Nicola Whitbread-Hastings became a mother, she expected the “typical” experience. Instead, she was thrust into a world of medical terminology, 24/7 care, and a diagnosis so rare there are only a few hundred cases worldwide.
In this episode of Everything Changed, Nicola joins us to share the raw, unfiltered reality of raising her son, Rudy, who lives with MCAHS1, a genetic condition that causes epilepsy, visual impairment, and profound physical disability.
In this episode we discuss:
* The COVID diagnosis Navigating the terrifying first weeks of lockdown while realising something was wrong.
* Finding out both she and her husband carried the same rare gene.
* The survival instinct Why she had to emotionally detach from her second pregnancy to survive the weight of a potential second diagnosis.
* Milestones vs inchstones The beautiful, small victories that mean everything.
This is a story about resilience, the fight of a special-needs parent, and how the arrival of her second son, Dexter, helped their family rediscover laughter in the chaos.
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Resources mentioned in this episode:
Haven House Children’s Hospice: https://www.havenhouse.org.uk/ Follow Rudy’s journey on Instagram: @rudysw0rld
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Timestamps
00:00 – Highlights: The moment everything changed 02:15 – The first signs and the COVID lockdown 08:50 – Getting the MCAHS1 diagnosis 16:10 – The heartbreaking reality of the second pregnancy 21:45 – The IVF journey and travelling to Barcelona 25:30 – Dexter: finding joy in “typical” motherhood 34:00 – Advice for parents facing a new diagnosis
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Harriet found a lump in the shower at 35 weeks pregnant. Three years, two recurrences and a stage four diagnosis later, she's still fighting, and she's doing it live for the first time on Everything Changed.In this episode, host Rosie Fawehimi sits down with Harriet Lawler to talk through her breast cancer journey: the diagnosis that arrived a week before she gave birth, the newborn daughter, Nellie, she raised through chemotherapy, the recurrence that turned stage three into stage four, and the therapy that helped her grieve the life she thought she'd have. Harriet also opens up about her current treatment in Frankfurt, and why she's chosen to keep fighting on her own terms, with her husband Joe by her side.Support Harriet's treatment: https://www.gofundme.com/f/help-our-hThis episode is sponsored by RevitaLash. Use code CHANGE20 for 20% off at revitalash.co.uk.Follow Everything Changed: instagram.com/everythingchangedpodcastFollow Rosie: instagram.com/rosie_fawehimiFollow Harriet: instagram.com/harrietdSubscribe for new episodes of Everything Changed.0:00 Cold Open: "There's Magic in Every Day"0:24 Sponsor: RevitaLash1:13 Welcome to Series 3, Our First Live Episode1:36 Meet Harriet Novak2:13 "I Am a Mum First"3:05 Diagnosed at 35 Weeks Pregnant4:31 Birth, Then Straight Into Chemo5:36 Navigating a Newborn and Chemo7:08 Cancer Treatment as a Full-Time Job8:08 Surgery and Radiotherapy9:12 The Recurrence10:39 Stage 4: Five Nodules on Her Lungs11:58 Finding Out in Mauritius13:04 "I'm Not Going to Be a Number"14:21 The Darkest Time15:30 Therapy and Grieving16:40 Remembering Alice18:33 Why She's Going to Germany20:44 A New Chemo, an Endless Fight22:05 Life During Treatment Weeks23:42 Talking to Nellie About It25:15 Milestones and Why "Everything Changed"26:19 Losing Her Hair26:52 The Mohican Moment30:05 Advice to Another Young Mum31:05 "There's Magic in Every Single Day"32:05 How to Support Harriet34:43 Closing Thanks
Special offerUse code CHANGE20 for 20% off your order at www.revitalash.co.ukIn our season two finale, Rosie sits down with Dariel Sidney, daughter of RevitaLash's founders and the company's VP of Philanthropy, for the story behind our podcast sponsor.Dariel's mother was diagnosed with stage four metastatic breast cancer at just 32. As she went through chemotherapy and radiation, the hardest part wasn't the treatment itself, it was the damage done to her once-beautiful lashes and brows. Her husband, a practicing ophthalmologist, set out to fix that. What started as a homemade formula in a small vial became RevitaLash, a brand now marking its 20th anniversary, sold in international markets since 2008, and built on a mission that's raised over $13 million for breast cancer research and support charities, including the Crick Institute and Future Dreams House.Rosie and Dariel talk about growing up alongside her mother's illness, the early "no category" marketing challenge of selling a product that was an entirely new category of cosmetics, what it means to carry on a parent's legacy after loss, and the genuine hope Dariel's seeing in cancer research right now, from BRCA testing to pan-cancer drug trials that go after cancer cells before they can develop into breast or lung cancer at all.It's an honest, emotional conversation about turning grief into purpose, and a fitting way to close out the season.In this episode[00:01:43] How a vial and a Q-Tip became a 20-year-old global beauty brand[00:03:04] Growing up with a mother in and out of chemotherapy[00:07:20] Building a category that didn't exist yet.[00:12:30] RevitaLash's philanthropic arm and the "20 Years, 20 Million, One Mission" campaign[00:13:07] Partnerships with the Crick Institute and Future Dreams House[00:24:19] BRCA testing, genetic risk, and family planning decisions[00:25:52] Why one oncologist believes chemotherapy will one day be obsolete[00:31:52] A backstage moment at the Future Dreams fashion show that stuck with both of themLinksRevitaLash Cosmetics: www.revitalash.co.ukSponsor disclosureThis episode features RevitaLash Cosmetics, official sponsor of Everything Changed.
Natalie Day went into labour and nearly didn't come home. Following a catastrophic placental abruption, she lost 4.5 litres of blood — almost her entire blood volume — and needed six transfusions to survive. Her newborn son was transferred to a high-dependency neonatal unit at another hospital. It would be five days before she was able to meet him. Doctors had already prepared her family for the possibility that she might not make it through the night.She made it. But the aftermath was only the beginning.Back home, and straight into lockdown, Natalie had no idea she had developed PTSD. Isolated, overwhelmed and unable to process what she had been through, she turned to alcohol and cocaine to numb the pain. What began as an escape quietly spiralled into addiction, bringing chaos into her home and pulling her further from the mother she wanted to be.It was her son who finally made her stop and look honestly at her life. Through the 12-step programme, therapy and a determination to rebuild herself from the ground up, she found a way back. Today, Natalie is 15 months sober — living proof that recovery is possible, and that even after the darkest times, it is never too late to find your way back to yourself.
Naomi Alexander joined the military at 16 because someone told her she couldn't do it. She served in Iraq. She came home, left the army, and seven months later said yes to driving drugs from Amsterdam to the UK without a second thought.She was caught at the Channel Tunnel. She went to prison. She had her son inside.Today she is a yoga teacher, holistic therapist and Buddhist practitioner who holds healing space for people finding their way back to themselves.In this episode Naomi talks about growing up as one of the only brown girls in a small Lake District town, being born into a home shaped by addiction, becoming a mum at 16, the ranking officer who told her to choose between her baby and her military career, what it felt like to sleep through mortar fire in Iraq, the phone call that changed everything, and why she believes there are no mistakes — only choices that lead you exactly where you are meant to be."Naomi Momodu was the young mum. Naomi Thripland was the drug runner. Naomi Alexander is the medicine woman."This episode is brought to you by RevitaLash Cosmetics. RevitaLash was founded by a physician who created a lash serum for his wife during her breast cancer treatment, because he wanted her to feel like herself again. Find them at revitalash.co.uk ✨Chapters:00:00 Introduction00:38 Childhood as initiation: addiction, the Lake District, being the only brown family01:20 Becoming a mum at 16, and naming her Aiesha02:27 Joining the military because someone said she couldn't04:14 Iraq: sleeping through mortar fire06:25 Leaving the military and hitting rock bottom07:37 The phone call and the decision09:36 Caught at the Channel Tunnel10:08 Arrest, bail, pregnancy and the year on pause11:16 Nine years, reduced to four: what prison was actually like13:31 The mother and baby unit16:01 Shame, guilt and the gap between who people thought she was17:43 Buddhism and the stranger who knocked on her door26:38 Three names, three women28:56 Turning poison into medicineFollow Everything Changed:Instagram: instagram.com/everythingchangedpodcastSpotify: https://open.spotify.com/show/2XH1S48Q9rubN7TaywfxVe?si=cd71458fbb06449b