--- title: Charles’ Story description: Our daughter Imogen was born in 2012 at 30 weeks, and spent her first month in intensive care. image: https://blog.congenica.com/hubfs/Imogen%20at%201%20hr%20old.jpg --- - [Our Customers and Partners](http://www.congenica.com/our-customers) - [Our Product Portfolio](http://www.congenica.com/congenica-products) - **Inherited Diseases** - [Rare Disease](http://www.congenica.com/congenica-rare-disease) - [Inherited Cancer](http://www.congenica.com/congenica-inherited-cancer) - [Prenatal Health](http://www.congenica.com/congenica-prenatal) - [Carrier Screening](http://www.congenica.com/congenica-carrier-screening) - [Neurodevelopmental Disorders](http://www.congenica.com/congenica-neuro) - **Somatic Oncology** - [Solid Tumours](http://www.congenica.com/congenica-oncology) - **Pathogen** - [Pathogen Surveillance](http://www.congenica.com/congenica-pathogen-surveillance) - [Our Services](http://www.congenica.com/congenica-services) - [Clinical Interpretation Services](http://www.congenica.com/congenica-clinical-interpretation-services) - [Professional Services](http://www.congenica.com/professional-services) - [Customer Support](http://www.congenica.com/customer-support) - [Pharma Services](http://www.congenica.com/pharma-services) - Resources - [Publications](http://www.congenica.com/publications) - [Supporting materials](http://www.congenica.com/resources) - [News](https://blog.congenica.com/) - [Events and webinars](http://www.congenica.com/events-webinars) - [About us](http://www.congenica.com) - [Leadership Team](http://www.congenica.com/leadership) - [Quality](http://www.congenica.com/quality) - [Investors](http://www.congenica.com/investors) - [People and Vacancies](http://www.congenica.com/people) - [Contact us](http://www.congenica.com/contact) Login ##### Please select your location and reference genome: [America - GRCh37](https://us-37.congenica.com/) [America - GRCh38](https://us-38.congenica.com/) [Europe, Middle East, Africa - GRCh37](https://eu-37.congenica.com/) [Europe, Middle East, Africa - GRCh38](https://eu-38.congenica.com/) [Overview](https://blog.congenica.com) [Charles’ Story](https://blog.congenica.com/a-dual-perspective-on-genomic-medicine-0-0-0) ![Charles’ Story](https://blog.congenica.com/hubfs/Imogen%20at%201%20hr%20old.jpg) Patient Advocacy Chapter 1 # Charles’ Story 12/4/2020    |    0 min read Our daughter Imogen was born in 2012 at 30 weeks, and spent her first month in intensive care. When the time finally came to leave the hospital, we were relieved and felt incredibly lucky to be taking home a healthy baby, despite her premature entry into the world. But when she was around six months old, we noticed she had stopped laughing and taking an interest in her surroundings. We knew something was very wrong when she started making strange movements, so we took her to A&E, where we were told that she had a catastrophic and potentially fatal form of epilepsy called West Syndrome. Imogen was subsequently diagnosed with cerebral palsy, and had to undergo major surgery on her hips and femur bones as they had not formed properly. [![Read the full article here](https://no-cache.hubspot.com/cta/default/6863388/f83665af-012c-4650-bcdd-4f7f3dfa6fbd.png)](https://cta-redirect.hubspot.com/cta/redirect/6863388/f83665af-012c-4650-bcdd-4f7f3dfa6fbd) --- ### Related articles ![The Real Costs of Rare Disease](https://blog.congenica.com/hs-fs/hubfs/Webinar%20the%20cost%20of%20rare%20disease%20(2).png?width=320&height=192&name=Webinar%20the%20cost%20of%20rare%20disease%20(2).png) 11/25/2022 #### [The Real Costs of Rare Disease](https://blog.congenica.com/the-real-costs-of-rare-disease) Congenica welcomed an expert panel to discuss the true cost of rare disease, from birth to diagnosis, childhood to adulthood. ![Genomics in South Africa](https://blog.congenica.com/hs-fs/hubfs/Patient%20stories%20(2).png?width=320&height=192&name=Patient%20stories%20(2).png) 9/1/2022 #### [Genomics in South Africa](https://blog.congenica.com/genomics-in-south-africa) A personal view of Genomics in South Africa by Diane May, mother to Matthew who has been diagnosed with Morquio syndrome. ![Living with a rare disease in India](https://blog.congenica.com/hs-fs/hubfs/Living%20with%20a%20are%20disease%20in%20India.png?width=320&height=192&name=Living%20with%20a%20are%20disease%20in%20India.png) 8/5/2022 #### [Living with a rare disease in India](https://blog.congenica.com/living-with-a-rare-disease-in-india) As part of our series looking at rare diseases around the world, guest blogger Swapna Roopesh discusses living with a rare disease in India.  ##### Congenica is available as a CE Marked IVD clinical decision support platform for clinical diagnostic use for inherited genetic disorders in the UK and EU, Iceland, Lichtenstein, Norway, Switzerland and Turkey. In all other countries, ensuring compliance with relevant local, national and international clinical laboratory regulations is the responsibility of the laboratory. - [Privacy Policy](http://www.congenica.com/privacy-policy) - [Cookie Policy](http://www.congenica.com/cookie-policy) Log in to Congenica ##### Please select your location and reference genome: [America - GRCh37](https://us-37.congenica.com/) [America - GRCh38](https://us-38.congenica.com/) [Europe, Middle East, Africa - GRCh37](https://eu-37.congenica.com/) [Europe, Middle East, Africa - GRCh38](https://eu-38.congenica.com/) ![CE](https://blog.congenica.com/hs-fs/hubfs/CE.png?width=80&height=80&name=CE.png) ![ISO-27001](https://blog.congenica.com/hs-fs/hubfs/ISO-27001.jpg?width=80&height=80&name=ISO-27001.jpg) ![TR-Testmark_9000030872_EN_2024_CMYK](https://blog.congenica.com/hs-fs/hubfs/2023%20website%20images/TR-Testmark_9000030872_EN_2024_CMYK.png?width=80&height=80&name=TR-Testmark_9000030872_EN_2024_CMYK.png) ![HIPAA Compliant](https://blog.congenica.com/hs-fs/hubfs/HIPAA%20Compliant.png?width=80&height=80&name=HIPAA%20Compliant.png) Copyright © 2026 Congenica Ltd. Company number: 8273616 Registered in England and Wales.