29/08/2026
At Pass It On! Kids UK CIC, we take pride in providing a community to all. We thrive in a village that we created, the one we are always told exists but didn't before we formed our own for all.
Phoebe is part of our Mini-Team, meaning, she is a child of one of our core team and helps us to form our projects by simply just being part of us collectively alongside the team's children overall.
When we mention that we are a unique organisation, we truly mean it. Behind the scenes, we are a team of parents with lived experience through all sorts of lenses. One main experience is being parents and carers for immediate family members that have disabilities, including ourselves.
Phoebe is a brilliant little lady, who brings joy and smiles in every room just by being her. She is a determined force, is incredibly good at counting and I don't think that there is more of a bigger Mrs Rachel and Bluey fan than her... and so this project is dedicated to Phoebe. Which if you have known about us as an organisation long enough, you'll know that we have previously done this and take huge pride in celebrating individuals that are core team and now, our mini's.
Phoebe is nearly 2 year old & is strongly suspected of having Periventricular Leukomalacia (PVL) a type of brain injury that affects the white matter around the fluid-filled cavities in the brain, which had shown in her previous MRI scan.
They are still investigating this as other possibilities had shown on previous tests.
She will be due another MRI scan in the next coming months.
Phoebe’s brain injury from birth, has caused significant developmental and mobility difficulties.
She has Hypotonia (low muscle tone) on her right side and Hypertonia (increased muscle tone) on her left side, and has recently been diagnosed with mild scoliosis in her upper spine.
She has dysphagia, meaning she is unable to swallow and use her muscles in her throat and mouth, she is NG Tube fed only.
She also requires prescription glasses due to her eye sight and the slight squint as well as being diagnosed with photophobia, if she is exposed to white light or sudden light changes, she is at risk of having a seizure. Phoebe experiences tremors throughout her body every day, the cause is still unknown and is currently under 3 seprate neurologists in different leading, specialist hospitals in the UK.
Just4Children are raising money to fund private specialist physiotherapy to give her the best possible opportunity to develop her strength, mobility and of course, her independence. Regular therapy could make a huge difference to her everyday life and help her work towards important milestones that many children are able to reach naturally.
Walking, talking, crawling, improving her fine and gross motor-skills, and even feeding herself without the use of an NG Tube.
Every donation, no matter how small, will go towards her physiotherapy and helping her reach her full potential.
We are incredibly grateful for every donation and share.
If you are unable to donate, simply raising awareness on behalf of Phoebe will also be extremely appreciated.
If you would be interested in hosting a fundraiser event, cake sale, run, challenge or a collective donation, on Phoebe's behalf, please get in touch!
We are working in collaboration with Spotted in Harlow, hosting a fundraiser party, to celebrate Phoebe and raise vital funds to assist her ability to move.
Keep the date in your diary, let's party together for Phoebe!
Follow Phoebe's journey here: Phoebe's PVL Journey
You can donate directly on the link below:
https://www.justgiving.com/campaign/phoebesjourney?utm_medium=CA&utm_source=CL
