Our Story

We could tell as his parents, that his body was drastically changing. Another CT scan was to be carried out, however we were to prepare ourselves that medically the choice was being taken out of our hands. We had to prepare to say goodbye.

On the 19th May 2019 at 2:56pm, Grayson came in to our world and made us a family. The most incredible pregnancy, a magical birth and a healthy happy baby boy. It was all we could have ever wished for.

From the day we arrived home, he thrived. He gained weight, fed really well (although a little silent reflux upset sleep) and was just the most smiley, happy and settled little boy who loved to be in the company of family and friends.

On the 21st March 2020 our world crumbled- there is no other word to describe it. Grayson left our world, held so tightly in our arms. Our baby boy died of an Ultra Rare Disease called Acute Necrotizing Encephalopathy of Childhood (ANE).

Grayson had a high temperature on the 17th and 18th March which, once medicine had been administered, lowered and he continued to be his ‘normal happy self’. The 19th March arrived and the temperature had controlled itself but he was a little tired and less active. When the afternoon approached he was sick and then became very sleepy. We had assumed that he had a viral bug and with cutting two teeth, decided to check in with the doctor. Due to COVID-19, we had a video link call where the doctor assumed that he may be suffering from a viral infection. We were told should his temperature rise again, that antibiotics would be prescribed in the morning. Over the course of the night, Grayson was in and out of sleep (known now to us as being unconscious/conscious state) and the early hours of the morning he woke with a high pitched cry but no tears. Knowing this was not right, we called 999 and explained his symptoms. We were told that he didn’t meet the criteria for an ambulance to be sent and that a doctor would contact us back, to which they did and told us to take him to A&E to be checked over.

We drove Grayson to the hospital at 6am however on the journey he started to seizure. We waited for 8-10 minutes on the side of the road for an ambulance to arrive. Upon an ambulance arriving, anti-seizure drugs were given and we continued the journey to the hospital. We were taken immediately into resus where a team of doctors were waiting and started treatment. They checked and tested for everything… No signs of meningitis, no sepsis, no infections, nothing… Grayson was not coming around from the drugs as he should have been and a CT scan showed minor abnormalities to the left side of his brain. They made the decision to transfer him to John Radcliffe after being taken to theatre and being intubated. We were not allowed to join him on this journey due to COVID.

Arriving at John Radcliffe, we were sent to a parent waiting room in the PICU ward. A doctor later joined us to introduce himself where he explained that they were taking Grayson for another CT scan. His journey went well and his stats remained good but concerns were growing. At around 10pm we were told that we could see Grayson but they needed to speak with us first. We were taken into a staff room where we were sat with a masked nurse, doctor and neurologist. They explained that the small abnormalities that were showing previously in his brain had now deteriorated and he had severe extensive brain damage. They didn’t know what was taking our little boy, they had never seen such a quick deterioration of the brain where all other parts of the body remained steady. A team of doctors/neurologists were contacted to which ANE was diagnosed as the cause. Overnight would be critical for Grayson!

He was deeply sedated so that his brain and the awareness/strain of working would allow him to relax. He was on anti-seizure medication, amongst many others and was given a dose of IVIG- immunity from others to try to stop the spread of the illness and the chemical effects it was having.

As his COVID results were yet to be known, the highest of precautions were still being taken which meant that we could not be by his bedside all night and family were unable to see Grayson or be with us.

The morning arrived and we were told that his stats remained good all night however his pupils were no longer dilating which was a sign that his body was shutting down. We could tell as his parents, that his body was drastically changing. Another CT scan was to be carried out however we were to prepare ourselves, that medically the choice was being taken out of our hands. We had to prepare to say goodbye! The CT scan revealed that the disease had spread, covering his brain and that much of it was inflamed and continued to do so. The choice was ours: continue and let it take its course or to choose a time/day that would allow us time with Grayson. We choose that now was to be the time. COVID restricted us staying at the hospital with him and we didn’t want to miss another second that we could be with him.

Grayson was moved to a side room and we had time to take hand and footprints, to read to him, play music and tell him how much he was loved whilst holding him so tightly. All machines were turned off and our beautiful baby boy remained breathing on his own for 20 minutes.

He was a fighter but it was a disease he could not continue to fight.