Two Weeks ago we sadly lost our baby boy Grayson to a very rare disease characterised by brain injury.
Grayson spent two days with a high fever but perfectly fine in himself otherwise. On the third day, the fever had gone however he was tired and less active. In the late afternoon he was sick and then slept. With two teeth cutting we assumed he was teething with maybe a viral bug to fight off so called the GP. With the current COVID situation we had a video link call to which they put it down to viral/infection.
Over the course of the night Grayson was in and out of a deep sleep/semi conscious state and had a high pitch cry early in the morning but without any tears. Knowing this isn’t normal we called 999 and explained his symptoms, only to be told that due to him not meeting current criteria to send an ambulance we would be advised to take him into A&E to be examined. We drove Grayson to the hospital at 6am on the 20th March where he had a localised seizure on the journey. They believed this continued even after medication was given by ambulance crew. Concern grew to the amount of time this carried on, so a CT scan was carried out to investigate the cause or potential damage. Some small abnormalities were found and we were told that it would be best to transfer him to the John Radcliffe Children’s Hospital in Oxford. He was later admitted into PICU and put on an intubator to control his breathing and allow his body time to rest. Due to COVID-19, the hospitals were taking all precautions needed as Grayson, although had been tested the results would take 24hrs, and us had to be treated as we had the virus. That night we were told that following another CT scan the small abnormalities had now grown and was rapidly spreading across his brain. He had now suffered severe brain damage and were told the next 24hrs would be critical. At this point the Neurologist’s couldn’t identify what was actually attacking his brain, which as a parent is hard to digest. They gave him further medication to allow his brain time to rest and was told that it would be up his body to stop the clock and prevent any further damage. Grayson unfortunately couldn’t fight this disease and passed away on the 21st March 2020 at 16:15pm in our arms.
After numerous calls with Doctors and Neurologists in the UK, a diagnosis was given of “Acute Necrotizing Encephalopathy of Childhood” abbreviated ANE. Grayson’s Covid-19 test results also came back as a negative. A very rare, severe and rapidly progressing encephalopathy (disease affecting the brain) which develops shortly after a viral infection. Mainly found in children who have previously been fit and well and cases reported being between 3 month- 12 years. Studies are currently being updated although so far, only 155 cases have been known since 1995. The exact mechanism of the disease is not yet known along with the unknown trigger. It is presumed to be an immune-mediated process triggered by the viral infection. I.E Influenza. If you have time and would like to educate yourself further please take a look at the website currently supporting findings and stories of families affected by ANE https://aneinternational.org/
The last two weeks have been the hardest times of our lives and this has been the hardest video that we have ever put together. At the moment our emotions and thoughts have been running wild. This video has given us a focus and comfort- this will be forever with us. Our purpose now as Grayson’s parents is to build awareness, share our story, share his smile. Please like and Share this video if possible to Raise awareness of ANE – It really would mean the world to us.