Just4Children are raising funds for a private MRI scan for Freya-Rose bringing her closer to the answers needed to better understand her symptoms and guide her future care.
My name is Kiera, and I am the mum of my beautiful two-year-old daughter, Freya-Rose and her two elder siblings.
Since the day she was born, I have been searching for answers.
Freya-Rose has Global Developmental Delay, fluctuating muscle tone, fluctuating asymmetry affecting her left side, an unsafe swallow requiring thickened fluids, recurrent chest infections, chronic diarrhoea and neurological-type episodes affecting her awareness, movement and safety. She experiences repeated head-drop, vacant and sleep-related episodes, resulting in repeated falls and injuries.
Many of the concerns I first observed have since been independently witnessed and documented by physiotherapists, speech and language therapists, hospital doctors, nurses, other professionals and a consultant paediatric neurologist.
Despite extensive NHS investigations, we still do not know the underlying cause of my daughter’s symptoms. Her consultant paediatric neurologist has recommended an MRI scan alongside Whole Genome Sequencing. Although an MRI cannot guarantee a diagnosis, it is one of the most important outstanding investigations and could provide valuable information to guide her future care.
Unfortunately, NHS waiting times mean we could be waiting many more months while Freya-Rose continues to experience neurological-type episodes, repeated falls and developmental challenges.
Just4Children are fundraising for a private MRI scan and any associated specialist assessments, if recommended, to reduce the wait for an investigation already recommended by her consultant.
All I want is answers for my daughter. Every donation or share brings us one step closer.
Thank you for taking the time to read her story and for supporting my little girl
