Help Maisie get on her feet to walk again after tumor

Hi, thank you all for taking the time to read our story,

We’re jodie and Daniel , Maisie’s mum and dad based at woodgate West Sussex and we’re reaching out to share our story and ask for your support during an incredibly difficult time that no parent or child should ever endure in a lifetime, Our amazing bright 12-year-old daughter, Maisie, is facing a battle no child should ever have to encounter and we need your help and support.

For around 9 months Maisie had been suffering with severe neck pain and tingling in her hands, and had a slight voice change , Despite our concerns of 8 visits to the doctors gp and 4 trips to A&E, no one would listen or investigate things further, it had come to the point that Maisie was in consistent pain and still she braved herself everyday to attend school and do daily activities , but unfortunately on the 7th of November she returned home after school and kept falling to the floor with no balance and no bladder function control , she eventually! Got taken into st Richard’s hospital by ambulance which took 4hrs 40mins to arrive, and the following day she had a full body MRI scan, this is when we received the devastating news that has turned our world upside down overnight , that Maisie sadly has a 7cm tumor inside the spinal cord in her neck.

She then was transferred immediately to Southampton children’s hospital where they re done the scan to plan ahead for the surgery by the paediatric neurologists who also informed us it’s VERY rare and that only around 40 children have this per year in the Uk , Maisie was very brave and undertook 8.5hrs of surgery ,we was told it was a high risk operation but we expected her to raise to her feet after healing we wasn’t told otherwise , we was informed everything went to plan , and they seemed confident the tumor was Completely removed but this has left significant damage within the spinal cord and with the surgery she’s had to have to keep her alive , maisie now has nerve damage and is virtually paralysed chest down with limited movements and weakness and now cannot walk or stand up and is having to be hoisted into a wheelchair , it’s absolutely soul destroying to think of this and we’re not going to give up the fight and hope anytime soon,

Maisie has a long and uncertain road ahead. She will need months possibly years of intensive physiotherapy, rehabilitation, and specialist care to help her regain as much strength and independence back as possible. The nhs can only offer her 30 mins physio a day which isn’t nowhere near enough and has very basic equipment and no hi tech machines.

This journey has been unimaginably hard and emotional for us as a family being apart for months at a time ,Mum has stayed by Maisie’s side 24 hours a day since the 7th of November , and both of us have had to stop working, with Dad being self employed and having to keep things together at home and as normal as possible for our younger son Callum age 9, Dad makes the journey a few times a week from chichester to Southampton and back in time for school pickup, it’s been a emotional rollercoaster feels like a dream we will awake from .

Maisie’s first visit home was Christmas it was an emotional three days where we were finally able to be together as a family. It was a lovely moment ,but it also served as a reminder of how much support Maisie will need once she is discharged , the doctors do not know the full outcome of Maisie’s recovery as her case is rare and unknown and no time scale has been put in place , mum Jodie will now likely be Maisie’s full time carer and will have to give up her job she loves working with children at the school,

the financial strain of her care is overwhelming to even think of , From private rehabilitation to specialist equipment and home adaptations in due course to travel expenses and therapy costs, change of our vehicle , the expenses are worrying . Asking for help has been the last thing we’d ever dream of doing it’s incredibly hard for us to ask for help we’re just a normal family but nothing prepared us for this. but as parents we want the best outcome for maisie to live her life as independently as possible as a child should do she is super bright , loving caring & funny her dream was to open a doggy school one day .

Your donations will help us with

- Specialist equipment to support Maisie’s mobility and daily needs.

- Home adaptations to make in due course once we know Maisie’s full outcome which will need to be accessible and safe for her.

- Travel, accommodation, and therapy costs during her rehabilitation.

-best help we can find for rehabilitation privately with robotics machines which nhs don’t offer .

-mobility vehicle to buy or rent ,

-electric wheelchair in due course,

I know it’s tough out their for everyone so even if you are unable to donate PLEASE PLEASE share along far and wide that would be amazing,

with many thanks Daniel & Jodie xxx