He has a very rare condition called ANE [ Acute Necrotizing Encephalopathy ]
Blake' s journey so far:
4 year old Blake visited the Dr's as he was unwell and they said it was a stomach bug/ virus. Within a 24 hr period Blake became so weak he couldn’t hold his own head up, he could hardly speak he began to slur his words he then lost his sight and became unresponsive. He went into Hull Royal Infirmary on the 2nd February 2018, with medics believing he had meningitis. Blake deteriorated further and was put into a medically induced coma.
Blake has Acute Necrotizing Encephalopathy which is a rare brain disease so rare there are only 150 cases documented, mainly being in Asia, heartbreakingly this disease carries a prognosis of 30% survival rate and only a 10% recovery rate but always left with some form of brain damage sadly there is no known cure only supportive treatment, Blake was a happy healthy little boy attending school prior to catching this rare disease.
Links to news stories:
Blake has had the toughest fight of his life and one nobody should have to go through.
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 £5,000 to £30,000 each.
Blake can no longer do the things he could before, he cannot walk, talk, move his arms. He cannot sit unaided for more than a Cpl of minutes (with someone sat 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 a massive thing for Blake and all the family as communication is something that is needed to help Blake progress and tell when he is uncomfortable and in pain. There are treatments available privately in other countries to help Blake to move his jaw and get his muscles working. This would make the world of difference for Blake.
Blake is at home however he is in a bed in the living room making home life very difficult for all the family. The local services support has been sparce and not looking like it will change anytime soon.
This is the same for therapies for Blake, he has a Cpl of hrs a week physio and the occasional home visit from OT's. He needs a lot more support and with the support you give we believe we can get him talking, eating and communicating again.
Please watch this youtube video of Blakes fight so far.....
Thank you for taking the time to read our fundraising page and hopefully learning more about Blakes rare disease.
Please share even if you don't donate as this will help immensely
- elisa gray
- Amy Newall
- Glenis Penrose
- Stephanie Horan
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