“Blake has had the toughest fight of his life and one nobody should have to go through”.




Blake was taken ill in February 2018 and spent 5 months in Sheffield Children’s Hospital, he was then transferred to The Children’s Trust in Surrey for further rehabilitation. He returned homein September 2018.
He has been diagnosed wtih a very rare condition called ANE (Acute Necrotizing Encephalpathy.
Mum was told he had a stomach virus and was sent home from the doctors.
But Blake only got worse during the next two days, and on the second night after being sent home became violently sick.
The next morning, on February 1, Mum called for an ambulance and he was rushed to Hull Royal Infirmary. The thought he had dehydration from the stomach virus.
Blake became so weak he could not even hold his own head up and could hardly speak. He lost his sight and became unreponsive.

“Then in the early hours of the morning he was violently sick and became really droopy so we called for an ambulance. We thought it was dehydration at first but on the way to hospital he appeared to be losing his sight. It was as if he was looking right through us. By the time we got to the hospital he could not move, see or hear and we knew there was something seriously wrong.”

He just began to deteriorate. The first thing was he began to slur his words. Then he started acting like he couldn’t see. Then he was completely unresponsive.
He deteriorated so quickly he began to have seizures, so he was sedated and put into an induced coma. On February 2, Blake was transferred to intensive care at Sheffield Children’s Hospital and put on life support. Numerous tests were carried out on him and he was put into isolation after it was shown he had Flu B – the cause of Acute Necrotizing Encephalopathy. He was later diagnosed with the condition, which is so rare there are only 150 cases documented globally, mainly in Asia. The condition happens when the body’s defences turn against themselves and attacks, causing swelling in the brain and spinal cord. Mum, who remains at her son’s bedside, said: “We are absolutely devastated”.“Before all this he was a perfectly happy little boy. He was really bubbly and cheeky and loved to play outdoors. He absolutely loves animals, they are his favourite.


“It’s a condition that is just so rare and not something you can catch”.

Most cases are known in Asia and we have found a case of it in Sydney, but that’s about it, I don’t think they’ve ever had it here before.”
Heart breakingly, the disease carries only a 30 per cent survival rate and only a 10 per cent recovery. Patients usually have some form of brain damage.
There are miracle cases – and we are praying little Blake is one of them.

“Blake was in hospital for seven weeks on Friday, but he came off life support after two weeks – which doctors say is amazing. They said in most cases people are on life support for months and  it takes that long to get to that stage – if they get to that stage.
Everyday I’m working with him, reading with him, showing him pictures and doing physio, trying to do anything I can to jog his memory and to keep his body working.
We’ve had so much support and we’re so grateful for everything and how proud we are of him.
We just want to raise awareness of the condition and let people know it’s out there”.
hile Blake’s Mum remained at his bedside, she was separated from her two other children, Haydon, 10 and Kayleb, 6 who remained with their grandparents.
Blake needs 24 hour care and a range of therapies and treatments which are not supplied through the NHS and some are even only done outside of the UK. The costs of these treatments are anywhere from 5000 – 30,000 pounds each.
Blake can no longer do the things he could before, he cannot walk, talk or move his arms. He cannot sit unaided for more than a couple of minutes (with some one sitting next to him). He is fed through a PEG and although he has started to have tasters, he is unable to open his mouth to chew.
Blake has no speech but really tries to sound the words he frustratingly wants to say.
This is a massive thing for Blake and all the family as communication is something that is needed to help Blake progress and for him to tell us when he is uncomfortable and in pain. There are treatments available privately in other countries to help Blake to move his jaq and get his muscles working. This would make the world of difference for Blake.
Not hearing his voice on a daily basis, is one of the losses that this family continues to face.
Blake is at home however he is in a bed in the living room. The local services support has been sparse and respite for this family doesn’t seem to be something coming in the near future. This is the same for therapies for Blake, he has a couple of hours a week of physio and the occasional home visit from OT’s. he needs a lot more support and the more support he is given – we believe we can get him talking, eating and communicating again.
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