Jog for Joey’s operations. Run 70 miles in 30 days

Hello, my name is Rob Iley and I’m willing to “JOG FOR JOEY “ and do a small gesture of run 70 miles in around 30 days to help raise some much needed donations for brave Joey’s crucial operations!

If we could raise £10 per mile I run then we’d hit the target of £700! Can you sponsor just 1 or even 2 miles? 

Below is Joey’s full story written by his mum and dad, please read it to understand the full extent of Joey’s struggles throughout his short life so far! They appreciate every donation that’s s made and thank you all! 

“Hi we are Charlotte and Barrie, mum and dad to little Joey, our brave little boy.

Joey was born on the 2nd of July 2017 after a long and very traumatic 72-hour delivery which resulted in Joey being admitted to NICU with septicemia along with other health issues. After a week in the hospital, we finally got to take our beautiful son home, but not long after this we quickly realized there was something different about Joey. We voiced our concerns to health professionals but unfortunately was dismissed as new and young parents being overly cautious.

 

As time went on, we realized our concerns were correct and that Joey was suffering from some medical issues. At 6 months old Joey had his first seizure which we then had to fight for the tests and investigations to go ahead, these investigations brought to light the fact that Joey has brain damage, left sided hypotonia, non-epileptic seizures, severe global developmental delay, problems with his sight, feeding and sleep (To name just a few!) Unfortunately, Joey was misdiagnosed which suggested his life expectancy for the condition would be cut very short!

 

Joey also does not react to noise or sound and this causes him distress and meltdowns. Joey takes Calpol and Ibuprofen everyday just to get some relief from the pain especially when in between courses of antibiotics. As a parent having to watch your child be in pain every day is heart breaking knowing there is nothing else you can do! When Joey has an ear infection it is relentless as he cannot tell you and minutes can feel like hours of him sobbing uncontrollably.

 

Joey is generally a happy and content little boy within his own world. Joey loves to be taken for walks in his wheelchair and to play in his garden swing at home. I myself work part time to care for Joey whilst Barrie continues to work full time, as this way one of us can always be home to care for Joey with a small respite as he attends a special needs nursery for 9 hours a week.

 

Joey has been under investigation regarding his ears and hearing for the last 2 years but with tests being unsuccessful. As of September 2020 Joey has suffered with reoccurring middle ear infections which causes him tremendous pain. As Joey is non-Verbal and unable to communicate due to his brain damage, we only really know he is in pain by his constant crying and having 'meltdowns' and with us unable to reassure him we're trying to help it's almost as if he is suffering in silence. After multiple visits to see our GP with the reoccurring ear infections. In just 22 weeks Joey has taken 10 oral courses of antibiotics, nasal sprays and steroid ear drops that I had to fight for, I managed to see an ENT consultant in February 2021 who confirmed Joey has glue ear and needs an urgent grommet operation however due to covid there are currently no routine operations taking place in our local hospital and the waiting times are unknown due to backlogs which could take years.

 

We decided to see a private consultant at Great Ormond Street hospital to get a second opinion and was told by this consultant that in fact Joey's glue ear is so severe that his eardrums are bulging and on the verge of perforating again and on further investigation that also his tonsils are scarred from past tonsillitis infections that have never been detected before now.

This consultant has informed us that Joey needs an urgent grommet operation to stop the reoccurring middle ear infections but also, he will need his tonsils and adenoids removed as well to help aid his problems in the hope that his hearing, sleeping and feeding problems will improve dramatically, meaning his tonsils will no longer block his airways which will help towards his feeding and drinking problems that he has had since birth. The adenoids being removed will solve the problem of his sleep apnoea and of course the grommets will allow the eardrums not to fill with fluid anymore, which causes the middle ear infections.

 

We would love to go ahead privately with these operations and have been told this can take place on the 15th April but at the cost of £7000. Joey is in desperate need of these operations to stop his constant pain and suffering and so we are kindly asking for your help, as we can now see light at the end of a very dark tunnel that we having been living in daily.

 

Any donations you are able to contribute that we so desperately need will be hugely appreciated to help improve Joey’s quality of life and will be life changing for all of us but most importantly Joey.

 

Thank you so much for taking your time to read our story

Charlotte, Barrie and Joey”