Jess Journey
Donation protected
Welcome to Jess story. I feel awful having to create this page as it feels like a form of begging. However, help is really needed at the moment.
Jess was diagnosed 7 years ago with IIH - a rare condition which causes a build up of fluid round the brain causing many medical complications. Since diagnosis Jess has raised £2,000 for the charity hoping for a cure. She has been at Southampton Neugological Unit, referred to Royal London Hospital of Neurology and also waited 2 years for a referral to Birmingham Hospital to see a specialist for this condition - Dr Sinclair. Every doctor/neurologist has referred Jess back saying the illness is too complex. Now her current Neurosurgeon has slightly given up.
Her condition has led to the further diagnosis of severe epilepsy and now in December 2018 - hydrocephalus.
The ventricles in Jess brain have collapsed meaning they can no longer put in place a certain type of shunt (to drain the fluid) and she can only have a lumbar shunt (inserted into the back) however, this one has broken. The scans say the shunt is okay but jess has been in since the 14th march with chronic head pains, sickness and more. Due to the recent diagnosis of hydrocephalus the doctors said this morning 'they aren't sure and need more opinions' this will take a few days.
Jess has had
Multiple seizures
2 induced comas
3 NG feeding tubes
8 shunts (complete brain surgeries)
22 + (procedures in theatre)
Also has lost over 10 stone.
Despite all of this Jess still works full time and very hard at a residential care home and casually at a social club. Even though family members have tried to convince jess to take it easy, she doesn't want to feel bad about her illness preventing a normal life so she takes any hours offered and enjoys them.
This visit at current is the 9th hospital stay in 13 months.
Jess is desperate to get out of hospital and back to work due to finances (does not claim any disability benefits) which ultimately causes more illness as she is not healthy enough. The stress of no money causes a major upset for jess and prevents her from a proper rest period, causing more complications.
She is not aware this page has been made. Even though family and friends quite often lend money or pay for some things, money only stretches so far. I have been on the phone to disability this morning to try and get funding, however due to Jess being in hospital, this can take upto 16 weeks!
So I guess this page is a plead for anyone who can spare a couple of quid so that the money can be controlled, the hospital visits don't have to be limited (parking is atrocious) jess can get proper support and does not feel the urge to rush back to normality and cause more complications.
Please, if you can, just send a couple of £.
Absolutely anything will help.
Thank you. Xx
Jess was diagnosed 7 years ago with IIH - a rare condition which causes a build up of fluid round the brain causing many medical complications. Since diagnosis Jess has raised £2,000 for the charity hoping for a cure. She has been at Southampton Neugological Unit, referred to Royal London Hospital of Neurology and also waited 2 years for a referral to Birmingham Hospital to see a specialist for this condition - Dr Sinclair. Every doctor/neurologist has referred Jess back saying the illness is too complex. Now her current Neurosurgeon has slightly given up.
Her condition has led to the further diagnosis of severe epilepsy and now in December 2018 - hydrocephalus.
The ventricles in Jess brain have collapsed meaning they can no longer put in place a certain type of shunt (to drain the fluid) and she can only have a lumbar shunt (inserted into the back) however, this one has broken. The scans say the shunt is okay but jess has been in since the 14th march with chronic head pains, sickness and more. Due to the recent diagnosis of hydrocephalus the doctors said this morning 'they aren't sure and need more opinions' this will take a few days.
Jess has had
Multiple seizures
2 induced comas
3 NG feeding tubes
8 shunts (complete brain surgeries)
22 + (procedures in theatre)
Also has lost over 10 stone.
Despite all of this Jess still works full time and very hard at a residential care home and casually at a social club. Even though family members have tried to convince jess to take it easy, she doesn't want to feel bad about her illness preventing a normal life so she takes any hours offered and enjoys them.
This visit at current is the 9th hospital stay in 13 months.
Jess is desperate to get out of hospital and back to work due to finances (does not claim any disability benefits) which ultimately causes more illness as she is not healthy enough. The stress of no money causes a major upset for jess and prevents her from a proper rest period, causing more complications.
She is not aware this page has been made. Even though family and friends quite often lend money or pay for some things, money only stretches so far. I have been on the phone to disability this morning to try and get funding, however due to Jess being in hospital, this can take upto 16 weeks!
So I guess this page is a plead for anyone who can spare a couple of quid so that the money can be controlled, the hospital visits don't have to be limited (parking is atrocious) jess can get proper support and does not feel the urge to rush back to normality and cause more complications.
Please, if you can, just send a couple of £.
Absolutely anything will help.
Thank you. Xx
Organizer
Kathleen Parratt
Organizer
England
