Just4Children are raising funds.to supporting Freya’s wider medical ongoing needs, including specialist investigations, specialist equipment, therapies, safety equipment and travel costs related to her medical care.
My name is Kiera, and I am mum to my beautiful daughter Freya-Rose and her two siblings.
From the very beginning, Freya-Rose’s journey has not been straightforward. My pregnancy, her birth and the days and weeks that followed were extremely difficult and complicated, with concerns about her wellbeing around delivery and complications after she was born. As Freya has grown, it has become increasingly clear that she has additional difficulties affecting her development, movement, feeding, awareness and safety. We are now trying to understand why and find the right support for her.
Freya-Rose has Global Developmental Delay, fluctuating muscle tone and asymmetrical motor patterns, an unsafe swallow requiring thickened fluids, recurrent chest infections prior to thickened fluids, chronic diarrhoea and unexplained neurological-type episodes affecting her awareness, movement and safety.
Many of her difficulties have been independently observed and documented by the professionals involved in her care, including physiotherapy, occupational therapy, speech and language therapy, hospital staff and her consultant paediatric neurologist. Many of these difficulties have also been present since infancy.
Freya has now had an MRI through the NHS, but we still don’t have answers. Her MRI showed an area of unexplained change which her neurology team is continuing to consider alongside her wider difficulties and symptoms. Further investigations, including an inpatient video-telemetry EEG and Whole Genome Sequencing, are also underway.
Just4Children are fundraising to help Freya access additional specialist support alongside her NHS care, including an independent paediatric neurology review of her full medical history and existing investigations, access to investigations already recommended by her clinicians, further specialist assessment of the unexplained MRI findings, specialist equipment more appropriately suited to her individual needs, safety equipment and private therapies such as play therapy and hydrotherapy.
We don’t know yet what is causing Freya’s difficulties, but I simply want to give her the best opportunity to understand what is happening, access the right support and continue developing as safely and comfortably as possible.
Every donation and share helps us move one step closer to finding answers and getting Freya the specialist support she needs.
Thank you for helping us find answers for Freya-Rose.
Facebook: Freya-Rose’s Journey
Instagram: @freyaroses_journey
