ASHTON- LEE’S NEW WHEELCHAIR

Myself and a colleague Toni will be jumping 14000ft from an aeroplane on the 9th August in aid of the young man below who will turn 16 on that day an age he was told he wouldn't see.

He is a need of a new wheelchair to support his quality of life and ensure he lives every day to the fullest.

Every penny raised will take us closer to ensuring Ashton gets the chair he so desperately needs. So please donate what you can.

Here is part of his story.

Ashton-Lee Fearn-Betts

This is a story about me and my journey in life.

I was born full term and i was a normal healthy baby no complications and was allowed home with my mummy just one day after i entered this world.

However on the 25th March 2010 things started to change i was just 7months old when i had a febrile convulsation this caused me to stop breathing and my grandad had to help me whilst my uncle dan and aunty kate rang for an ambulance because my mummy was soo scared.

I was taking to hospital that night but sent home only a few hours later and told there was no concern and it was temperature related but unfortuantely these episodes contuined and got worse.

At the age of 1years old i was diagnosed with infant onset epilepsy but doctors hoped i would out grow this by the age of 5. i continued to grow up and i learned to ride a scooter, bike, play football all that stuff, my favourite food was a sunday roast i used to steal everyones yorkshire puddings.

I was in mainstream school for a short while but my seizures got so bad i suffered with many injuries and teachers struggled to manage because i was always starting to lose my skills.

In 2014 i had lost all my speech and i wasnt able to do all the stuff i could before has i would struggle although i did try.

In 2015 i was diagnosed with servere autistic regression and Lenox-gastaut type epilepsy this had a massive impact on me, i became doubley incontinant and was struggling to chew foods.

In 2016 i started having episodes of seizures which would result in me turning blue and been unable to breath so i was in and out of hospital alot drs trying to figure out what was going on.

In feb 2016 i suffered from my first ever status epilepticus this was extremly scary from me and all of my family and resulted in a long stay at hospital, because my seizures where so bad i was able to have a machine in my chest called a vagus nerve stimulator to help get better control of my seizures.

i recovered from this and was sent home but for the next 2 years things got extremely worse and i was refered to nottingham queens medical centre to be reviewed by their medical proffessionals has other drs was no longer able to meet my needs.

On 15th december 2018 i went to queens medical centre for a routine appointment but was admitted that day has my seizures was so bad, i recieved some emergency treatment that night and the next drs said i could go home has they believed i was causing myself to not breath (holding my breath) mummy argued this but not everyone listened luckily i became unwell which meant i wasnt allowed to be discharged and my mummy says it was lucky because less than a week later i had one of my episodes in hospital which caused me to stop breathing and i went into respiratory arrest, 22 drs come rushing in and helped me, i didnt leave the hospital then for 5months and when i left i was no longer able to eat normal food so i was fed through a gastric port in my belly, i had spent some days on life support too due to multiple respiratory arrests during the stay.

In 2019 i was discharged from queens medical centre after my 5month stay and i was to have 12hr care 2-1 because i was too unsafe and my mummy couldnt deliver the care on herself anymore (although she tried)

Fast forward too 2022 when i had a really bad spell again and this caused a futher respiratory arrest i was then placed on life support and transfered to sheffield childresn hospital during this stay many test was done because mummy was adiment that some body was missing something, id developed a weakness in my arms and legs and sometimes i struggled to even hold my toys, my head would flop forward and i was unable to support and my seizures was getting worse. When i was taken off life support i spent around a week with drs who made some changes to medications but they still wasnt able to find the cause to my decline over the seziures, how i had started of has one child but had then developed in to another, i was also partially paralysed and drs wasnt sure i would gain the skill back but with determination from my mummy and step daddy i did and i was able to walk again. Around 3months after this we recieved a letter from sheffield childrens hospital regarding the tests that had taken place and unfortuanetly the mri scan had shown i have a low grade glioma mid centre of my brain which is in operable due to its position and because of my already many medical conditons i wouldnt likely survive and treatment when the time comes due to this drs have said its terminal and at the moment it isnt at treatment stage when and if it ever does reach they wont treat me with chemotherapy or radiotherapy.

In december 2023 i was taken in to chesterfield childrens hospital due to my seizures again only this time it wasnt seizures but we didnt know this. During my time there i had multiple episodes where i would just stop breathing and oxygen couldnt help so i needed help. i was placed on life support in chesterfield childrens hospital on the 21st december and i arrived via embrace to sheffield childrens intensive care unit i was only supposed to be intubated for the safety of travel due my stopping breathing episode unfortunately this didnt turn out to be the case and i didnt come of life support untill 13th febuary 2024 this was after 6 failed extubations, i lost 10% of my body weight in the space of 2 weeks and was placed on TPN feeds has my stomache had stopped working and i was unable to digest anything, i also started bleeding lots from my tummy this would cause me lots of pain.

On 13th feb 2024 i was giving a tracheosotmy and 24 hr ventilator in order for me to breath i can never have my ventilator off.

They did find the cause in the end thankyou to one of the consultants who stood by my mummy and helped fight she was able to diagnose me with central aponias, which was caused by an ultra rare and atypical medical conditon that took 14years to diagnose, this conditon is called HNRNPU and I am 300th person worldwide to have this condition.

Thankyou for reading my story