Matthew's Story

Matthew’s Story Meet Matthew, a young superhero with love for Batman and a passion for school. Behind Matthew’s infectious smile he lives with Niemann-Pick Type C, a rare, progressive genetic condition that affects his whole body.   Matthew faces many challenges including difficulties in moving, speaking, swallowing, and feeding along with experiencing seizures and loss of cognitive skills. Matthew requires 1-1 support, and no two days are the same for the family.  Matthew’s Diagnosis Matthew had prolonged jaundice at birth and underwent treatment which unfortunately, did not work. The road to diagnosis was long and the family spent countless hours in hospital. Finally at 16 weeks old, Matthew was diagnosed with Niemann Type C. Matthew’s Mum Lynne says, ‘these challenges have made us a stronger family. It is very draining watching Matthew deteriorate in front of our eyes; it hurts so much, but if Matthew is smiling and we know he is happy, we are happy.’  Meeting Matthew’s Roald Dahl Nurse Fiona. Matthew’s first seizure was totally out of the blue, but their Roald Dahl Nurse Specialist Fiona, was there to offer support and guidance. With Fiona’s help, the family navigated the complex healthcare system, receiving critical medication advice and information. 

Lynne says, ‘Having someone at the end of the phone who you can talk to at any time, and someone who is willing to learn and understand about Matthew’s condition has been vital.   Fiona and Matthew have a great relationship, Fiona is very gentle, and she talks to him about his condition, rather than at him, to ensure he understands all the information.’   Through it all, their Roald Dahl Nurse Fiona, has been a constant source of support and comfort for the family. With her kindness, compassion, and expertise, she has been become an invaluable part of their lives.   Lynne says, ‘we would be absolutely lost without our Roald Dahl Nurse, she is always a smiling, friendly face.'  

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