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Lily’s story written by her mum Steph

Lily was diagnosed with Pachygyria on the 15th May 2015. Pachygyria is a rare brain disorder due to abnormal migration of nerve cells (neurons) in the developing brain and nervous system. Because of the Pachygyria Lily has a number of health conditions including Migrational Epilepsy, global development delay, Cerebral Palsy, feeding difficulties, behaviour difficulties, vision concerns, dysphagia & recurrent respiratory problems. At this point we were told Lily would never walk, talk or live past the age of 5 years old! I was then told Lily had Polymicrogyria too in a small part of her brain. Genetics told us Lily was only the 3rd person ever to be medically diagnosed with the exact same brain structure! Lily is now 7 years old and defying odds. Although her brain still functions at 18/24 months old, Lily can talk and uses Makaton to assist. Lily can also walk, however has constant swelling in the feet and legs causing pain and discomfort. 
Lily is the happiest child you will ever meet and she lets nothing effect her! We’ve been in and out of hospitals for the majority of Lily’s life. Lily has recently had a Vagus Nerve Stimulation (VNS) to try and help control her Epilepsy although despite that, and along with four medications, the doctors have now said there’s less than 5% chance of Lilys Epilepsy being controlled. Not the news we wanted, but Lily is still here fighting and while she is, so are we! 
In February 2020, we were granted with the dream of a life time! A wish granting charity called Starlight made it possible for us to go to Give Kids the World village in Florida (GKTW). It was so nice to be able to go and not have to worry about hospitals/therapy’s and appointments for a while and just enjoy time together as a family! We visited Disney World, Universal Studios & Waterworld and had such an amazing time! Although nothing compared to GKTW! The volunteers were absolutely incredible with all of us!! Nothing was too much for them! There was nothing but smiles and happiness! Coming back was the sad part! 
We are allowed to visit GKTW again as Alumni’s, however flights to Florida are not cheap! Having somewhere in the UK we could go to and just breath, would be absolutely incredible! For every family with children who have a life limiting conditions, a place for them to visit once in a life time will honestly impact them so much. The memories are ones to last a life time. And I hope many more families get to experience something like this!! 

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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.

Lynn Viatge
Founding Trustee

Lynn Viatge is a healthcare professional with broad and diverse experience in the clinical, research, digital and Higher and Further Education healthcare domains. She is currently Dean of Nursing and Health Futures at Petroc College, Devon. Lynn has been a Nursing and Midwifery Council registered nurse (Adult and Child) for over 30 years and her clinical career centred around cardiothoracic nursing. She later went on to work in clinical research and as a digital medical editor before moving into academia.

With a medical law and ethics MPhil from University of Glasgow and a professional research methods MSc from University of Portsmouth, her teaching expertise focuses on ethico-legal aspects of healthcare, patient safety and research, with a special interest in innovation in healthcare.

Lynn has worked for Innovate UK, an executive, non-departmental public body sponsored by the Department for Business, Energy and Industrial Strategy, as a privately contracted monitoring officer since 2011. This role monitors technical progress, project management and reporting and financial management of projects funded by IUK.

In her private time, Lynn is a long-time supporter of Kiva, supporting small entrepreneurs in LMIC countries.

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.