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Family's website aims to raise Hirschsprung's awareness

Family's website aims to raise Hirschsprung's awareness

Newsquest reporter Arron Evans and his wife Georgina, who live on Anglesey, welcomed son Ffredi Fôn into the world last April.
However, although it looked as though he was initially doing really well, it later became apparent that his bowel was not working as it should be.
After two days, Ffredi was transferred to Alder Hey Hospital in Liverpool and over the course of eight days he was treated by the surgical and neonatal teams in neonatal ICU.
He was then diagnosed with Hirschsprung's - a rare congenital disease that affects around 200 babies and children a year in the UK (1 in 5,000).
For Ffredi and other children with Hirschsprung's disease, their large intestine doesn't work in the way it should, meaning that the bowel can become blocked and result in a very serious infection.
Now one year old and thriving, Ffredi has bravely adapted to life with an ileostomy, a life-changing surgery that was necessary.
When he was first diagnosed, Arron and Georgina had never even heard of Hirschsprung's before. Sadly, this is the case for most people and it can be hard to know where to turn for information.
That is why they have set up a new website - www.hirschsprungsdisease.co.uk - in order to raise awareness of Hirschsprung's Disease and help others who have found or will find themselves in the same situations.
Georgina said: "Before Ffredi's diagnosis, we had never even heard of Hirschsprung's Disease. It's been a huge learning curve, and we realised that other families might be going through the same thing without the right information or support.
"We wanted to do something positive — to share our experience, and hopefully make a difference."
The family's website offers clear information about the condition, shares Ffredi's personal story, and highlights the support available for families.
They also hope to connect with medical professionals, other families, and members of the public who want to learn more and get involved.
Georgina is further raising awareness of Hirschsprung's Disease through social media via Instagram: @livewithgeorgina - 282,000 views to date and TikTok: @livewithgeorgina - 701,000 to date.
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