Roman’s story

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Roman’s story written by his mother Ellie.

Roman and his twin brother Harley we’re born on the 9th March 2019, shortly after birth it was discovered Roman had serious complications and after 3 weeks in NICU at the John Radcliffe hospital, we got the devastating diagnosis that Roman had a rare genetic condition called  Alagille syndrome. This condition affected Roman’s heart with Pulmonary atresia, this meant Roman had no pulmonary artery but instead he had tiny mapca vessels pumping the blood around his heart, we were told eventually these tiny mapcas would close off and there was nothing they could do for Roman, it was then we were refferd to a children’s hospice Helen and Douglas house, to enjoy our precious time with Roman in an environment where they could not only look after Roman but all of us as a family. 

We were initially told Roman may only live for a few weeks so we planned not to the leave the hospice, but Roman began to exceed expectations and we were able to go home with Roman.

Iinitially we were very scared to leave the support we had at Helen and Douglas house but as the months went on we became brave and confident enough to move back home with Roman and learn to care for him with the support of the home hospice team Rennie grove, who were there for us 24 hours a day along side Helen and douglas house outreach nurses. 

Roman was the most special, beautiful, kind and gentle soul, he touched the hearts of everyone who met him. People said they felt a deep connection with Roman, almost like he had been here before, Roman was wise beyond his years. During Romans short but beautiful life he got to experience some lovely things, and we were able to make so many wonderful memories including many day trips and one magical family Christmas, We were lucky enough to take Roman on holiday twice over the summer, visiting our favourite seaside town Wells-Next-The-Sea, where our family have always gone. It was an absolute privilege to have been able to take Roman there, where he got to feel the sand on his feet and dip his toes in the sea. Roman enjoyed an ice cream on the sea front, and his smile said it all. 

We made sure Roman got to spend lots quality time with his twin brother Harley, and we have so many beautiful photos to show Harley when he is older. 

I can’t put into words how amazing somewhere as special as the kids wish village will be for families to spend the most precious moments, to get a break from the hardest of times, to just feel the magic and see the wonder in there eyes, is immeasurable.

Roman taught us to love like no other, and we never took any moment for granted, we made sure every day was special. Roman will always be apart of our family, we may not be able to see him but he will always be with us in our hearts.

Roman passed away in the company of his family aged 10 months

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Tim Haines
Ambassador & Advisor

After taking a degree in zoology, Tim Haines started his career as a medical journalist and went on to work in science programming at BBC Radio and TV. After producing shows for strands like Horizon and Tomorrow’s World, he created the VFX driven natural history series Walking with Dinosaurs which is rated as one of BBC’s top 20 shows of all time.

He then left the BBC and set up the production company Impossible Pictures and created both factual and drama series such as Prehistoric Park and Primeval. He wrote several books to accompany these shows and was awarded an honorary fellowship at Bangor University.  Recently he created an immersive experience called Dinosaurs in the Wild which toured the UK but has now opened in Riyadh.

Zoe Scullard
Founding Trustee

Zoe has been on the Trustee Board since the charity’s creation in January 2020. 

She has an extensive academic and practical background in the management of clinical placements and the support of student nurses with disabilities in practice.  

As well as being Emmett’s grandmother, Zoe has previously held positions as: 

  • Dean of Health Care (South), Health Education England 
  • Associate Dean Inter-Disciplinary Education, Health Education Thames Valley 
  • Principal Lecturer Practice Learning at Buckinghamshire New University  
Graham Pettit
Founding Trustee

Graham has been on the Trustee Board since the charity’s creation in January 2020. 

He is an experienced banking professional. A highly accomplished strategic, performance, and risk management consultant.

Graham has also served as Trustee, Director and Chair of a small national UK children’s disability charity.

David Chang
Founding Trustee

Dave was the first recruited trustee of Emmett’s Genies and has been on the Trustee Board since the charity’s creation in January 2020. He is the father of two children. Daniel, his son, was diagnosed with Burkitt’s Lymphoma and spinal cord compression trauma in 2018.

He is a Chartered Engineer with a background in English Literature and Creative Writing. He works as a project manager in the Engineering and Scientific Instrumentation industry. Dave is currently involved as an Associate Researcher in a UCL-led project in Paediatric Ambulatory Cancer Care.

Amy Scullard
Chair and Founding Trustee

Amy first had the idea for Emmett’s Genies in September 2019; she put her ideas into action and by January 2020 she had recruited four other fantastic trustees. On the 11th January 2020 they had their first official trustee meeting. 

Amy is the mother of the charity’s inspiration, Emmett, and therefore has lived experience of having had a child who is critically unwell and who also had a wish granted. Amy has two children, works in the NHS as a Neurological Physiotherapist, having qualified in 2009, and in her spare time, loves doing charity work, playing netball, travelling and spending time with her wonderful family.