We are raising money to help Baby Shay on his journey to diagnosis, support and a better quality of life going forward.

Shay is a beautiful 14 month old little boy, who lives with his Mummy, Daddy, doting siblings Vienna and Pierce and pet dog Missie.

The world is different for Shay and he is not like your typical one year old. Shay has been diagnosed with global developmental delay, we have been told that he is severely delayed in all areas. As well as this Shay has hypotonia, meaning he is a very floppy baby, it wasn’t until recently that he learned to sit up and according to his doctor he is still grossly hypotonic even now. Shay doesn’t eat or drink and he is solely tube fed. His little legs have never bared any weight and he currently has no mobility.

An MRI in April brought to light abnormalities in Shays brain, at this time we do not know the significance of these findings, what is causing them or what they mean for Shays future. It is thought that a repeat MRI when Shays brain is more developed will give us more of an understanding and a clearer look on what is going on. Around the same time as his MRI the paediatricians decided genetic testing would be a good idea and that maybe a genetic or chromosomal disorder was causing Shays delays and the abnormal changes to his brain. Sadly we have since found that the hospital has either lost the results or never actually sent the blood work off for testing so we are no further on with that. It is also thought that Shay has seizures, daily cluster seizures as well as dystonia too. He was originally meant to be referred to neurology in April but along with the lost genetics tests / referral our local hospital never put through the neurology referral either. In May we were told Shay would be having an EEG to check for seizure activity and a follow up with neurology for multiple things but he was failed by the hospital yet again and there is no mention of an EEG on his record, despite lots of chasing and other medical professionals trying to push it forward too. In short the hospital told us that Shay would need a lot of support going forward and that they would be making many referrals and arranging different tests, after 5 months of waiting we received the news that absolutely nothing had been done and Shay had been completely forgotten about and let down by our local NHS service.

We are now going down the private health care route as it feels like our only option just now. Shay has suffered for too long and cannot wait the lengthy waits of the NHS anymore. With children like Shay early intervention is crucial and unfortunately he has not received that. He has already had his first private appointment with a paediatric neurologist and we know that the first steps are an EEG, nerve and muscle testing. (Which are very expensive!) he is scheduled to go to London at the beginning of September to start his journey. However, as a family we are not able to keep funding his care, tests and treatments long term even though we really wish we could, this is why we are grateful for any help and donations along the way. All money will go towards Shays tests and private appointments. We are also hoping to get Shay private physio therapy (after already waiting for 5 months through the nhs) which is costly, along with specialist equipment to help him progress, be safe and comfortable and have a chance at being mobile, so any funds we can raise will be greatly appreciated. We all want this little ray of sunshine to live the best possible life and be able to have some form of independence too.

Thank you all so much for supporting Shays journey, it means the world to us.