Piper is 3 from Upton Pontefract who was born with a genetic chromosome abnormality and is the only person ever to be recorded with this particular case. Although some of her disabilities are known to other syndromes she is utterly unique and for this reason her syndrome has no name and her prognosis is bleak.

A large percentage of Piper's brain is affected leading to severe complexities with cognition, muscle tone and coordination. With this Piper has global mental delay and is unable to speak or communicate. She has been tube fed from being 5 weeks old and has undergone numerous procedures. As a family we have lived between home and hospitals her whole life.

Having had her first physiotherapy session at just 7 days old Piper’s therapy journey has led to her successfully being able to hold her own head, sit, roll and stand independently. Piper has progressed from a fully supported standing frame to a walking frame which she enjoys thoroughly, she is unsteady on her feet and falls multiple times a day.

To continue getting stronger & defying the odds Piper needs regular exposure to more intensive therapies alongside specialist equipment which can not be accessed via the NHS. Treatment such as Hyperbaric oxygen therapy, Neurological rehabilitation and ongoing intensives could be life changing for Piper.

Each of these would play a crucial role to progress and support her development giving her a more purposeful and fulfilling life. Unfortunately, this comes at a considerable cost and we as a family just can not meet the need ourselves. In Piper's short life she has already overcome so many challenges and has shown nothing but determination and resilience to keep on fighting every single day and always with the biggest smile on her face. We so desperately want to be able to give our little girl the opportunities to continue to do just that.

This is why as Piper's family we are launching Piper’s Pathway!

Please join us on our journey and support in any way you can.

Thank you Team Piper X

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