Watch the video here
From Wednesday 26th April 2023
On 26th April, Action FCS presented a webinar focussing on FCS in Children. There is very little information available about FCS in children and parents and their children are often isolated and struggle to manage the condition within their home environment.
Action FCS brought together a panel of experts to share their experience and expertise from different perspectives. You will find the video at the bottom of this page.
Finian Day-Lewis - parent of children with FCS and Action FCS trustee
Devon Day-Lewis - person with FCS diagnosed as a six-year old, and son of Finian
Emma Footitt - Paediatric Metabolic Consultant, Great Ormond St Hospital, London
Rachel Skeath - Paediatric Dietitian, Great Ormond St Hospital, London.
Finian Day-Lewis is a father of three children, two of whom have FCS. He talked us through his journey of his baby’s illness and the subsequent diagnosis of FCS in two of his three children. His shared his experience of learning the language of FCS/LPLD, engaging with the medical profession. Learning about the process of weaning for his baby with FCS, cooking for a family with different dietary needs/requirements, and latterly, supporting a teenager with FCS.
Devon Day-Lewis found out he has FCS at the age of 6 after his younger brother was diagnosed as a baby. He is Fin’s second child, the eldest does not have FCS. He touches on the isolation of being different from his peers, the difficulties navigating his teenage years surrounded by the temptations of alcohol and the challenges of eating the ‘wrong’ food in the desire to do the same thing as those around him.
Together, they covered the experience of transitioning to adult services, how it feels from the perspectives of both the parent and the child, and they shared some strategies they've used through the years.
Emma Footit is a paediatric metabolic consultant at Great Ormond Street Hospital in London and looks after children with FCS. She shared her expertise, giving her clinical perspective of FCS in childhood and her experience of building a relationship with both the child and their parents. She identified key areas and stages where things can get tricky for both, and shared some strategies to help overcome some problems that can arise.
Rachel Skeath is a paediatric dietitian, Great Ormond St Hospital, London and advises children and their parents on how best to manage the FCS diet in order to best manage the symptom burden of FCS. She shared her expertise regarding good nutrition for babies and growing children with FCS and gave some suggestions on how to encourage good decision making when making food choices.