Ben’s goal is to walk, talk, play with his brothers. Ben needs vital intensive therapy for physio, OT and SLT along with specialised equipment in order to help him reach his full potential.
Ben is 7 years old from Lisburn. When he was just 4, our world changed when he was diagnosed with an ultra-rare genetic condition called Pitt-Hopkins Syndrome (PTHS).
PTHS is a neurodevelopmental condition caused by a spontaneous change in the TCF4 gene. It affects motor development, communication, learning and so much more, often resulting in moderate to severe intellectual disability. It is incredibly rare affecting around 1 in 300,000 children.
But Ben is so much more than his diagnosis. He is a funny, loving, determined little boy who longs to walk, communicate, play and interact with the world around him.
And we want to give him every opportunity to do just that.
To help Ben reach his potential, Just4Children are raising funds for intensive specialist therapies, including physiotherapy, occupational therapy, speech and language therapy and nervous-system regulation, alongside specialist equipment designed specifically around his needs.
These are therapies and opportunities that simply aren’t available to the level Ben needs through the NHS, but they can make a profound difference to his development, independence and quality of life.
We’ve already seen what intensive therapy can unlock for Ben. Every new skill, every tiny step forward, every moment where his world becomes a little bigger is huge for him — and for us.
Ben’s journey is tough, but it is also filled with hope.
We are desperate to give Ben every opportunity to help him reach his potential and discover what we can do.
Your support could help us give Ben access to the therapies, equipment and opportunities he needs to keep moving forward.
Every donation, no matter how small, can make a difference. We would also be grateful if you could share Ben’s story and help us to raise awareness.
Thank you for believing in Ben and helping us give him the opportunity to reach his potential.
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