Support for Edward & his parents Skye & Peter

Hi my name is Helen and I am Edwards Auntie and i am trying to help raise funds to support Edward & his parents Peter & Skye on this journey they are now facing.

Its going to be a long road ahead and anything will help support them .

A message from Skye

Life is gunna be so different for us but I’m just glad my boy is here and alive, he’s not had it easy bless him such a fighter! Love you my boysie xx

Edward has brain damage and needs intensive rehabilitation this is not near his home. Infact it is 80miles away from home.

For those that aren’t aware this is were things changed dramatically for Edward , his parents and his extended family.

Edward had a 2 hour status epilepticus 3 weeks ago. He was intubated and ventilated and sent to addenbrookes PICU. He was extubated the next day but didn’t wake up for 3 days and that was when his mum Skye & dad Peter knew something had gone wrong.

Edward had seizures previously as he is epileptic and carries a rare gene in his 5 short years of life he has had many seizures, he has a VNS in situ and on regular daily medication ( alot of medication)

He was sent for an MRI and we were told Edward had severe hypoxic injury to his brain ( starvation of oxygen ). 2 days later his lung collapsed and he was retubed.

He was taken for an emergency CT scan as his pupils were different shapes and sizes. The scan showed that his brain was extremely swollen and bruised pushing his brain stem down.

Edward was critically ill and there was a chance that he wouldn’t survive all our family was called in to see Edward.

He was put into a deep drug induced coma that literally stops all brain activity and machines take over everything. They also put a bolt and catheter in Edwards skull to measure the pressure in the brain.

His body was cooled down to help his brain recover,

He is a lot more stable now,but needs round the clock intense care.

Edward is still completely unresponsive, can’t move any of his limbs or body just has a blank stare. He has to be turned regularly to prevent bedsores,

We don’t know if he is blind as of yet as awaiting tests.

Edward can now not eat or drink due to having an unsafe swallow so is fed via a JEJ tube.

This is a far cry from how Edward was prior to this seizure, he was a fun loving energetic boy who loved nothing more then bouncing on his trampoline, splashing in the pool, being on his swing & keeping everyone on their toes running after him and boy was he fast !

Few more weeks in hospital then hopefully we will be moving into a brain injury rehabilitation unit these things take time we know but we want the best for Edward

as it could take years for recovery.

Life as Edwards family knew it has drastically changed , he will need a wheelchair, an adapted car , house adaptions , this is just the start .

Thank you for reading our journey & if you are unable to give via a donation then please give us a share