Weʼre raising £15,000 to Help with therapy and care for our Five year old little Brother Blake who has been taken ill with a rare Brain Disease
- Kingston upon Hull, Hull, UK
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My name is Haydon and my brother Kayleb is helping to write this too.
Our brother Blake has been in hospital for 3 months now and we do not know when he will be coming home to us. He has just turned 5 while in hospital and before he was taken ill in February this year he was a lovely little playful brother, he loved to tease us and loved paw patrol.
We need to raise some funds to help provide him with some equipment to help him be more comfortable and to help him with rehabilitation and to recover faster.
He has a very rare condition called ANE [ Acute Necrotizing Encephalopathy ] Grandad wrote that bit and the story of what happened to Blake below.
Hi I am Kayleb I am 6 and I love my brother Blake so much and I miss him and I can't wait to see him so I travel to Sheffield Hospital as much as I can. I know he is very poorly and when he comes home he will need a lot of care and I will play with him lots. if you can help us make his life easier and more comfortable at home please donate thank you.
This is how we wish it was again but know Blake is too poorly to play cheese touch with us.
He is moving to another place past London and we will not see him for ages which is really annoying but know its best for Blake.
We don't know if Blake can see, but we think he can hear us. He cannot move or even eat so is fed with a tube to his tummy. He has been lent a wheelchair which does not fit him properly and is hard to push outside. We are separated from our mummy as well as Blake and are being looked after by our Grandma & Grandad. When Blake and Mummy move to Tadworth we will have to wait for weeks to visit as it is so far away and expensive to stay so will miss our time together. If anyone can help with advice on places to stay near there please let my granddad know.
Thank you for reading our page and I hope you can share with others.
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.
They then transferred Blake to Sheffield Children’s Hospital where he currently remains fighting every step of the way. each day brings its own challenges for Blake and all the family. Blake will be moving to Tadworth in the coming weeks which will mean the family will be separated for even longer periods of time.
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.
We have been told by the hospital we need to pay for speech and language therapists and also need to buy specialist equipment for Blake which is not funded as well as further treatments to enable Blake to be comfortable.
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- 23 days ago
Haydon & Kayleb23 days ago
Big thank you
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Haydon & Kayleb started crowdfunding
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May 19, 2018
May 18, 2018
With the constant love of your family miracles do happen & will for you.. My best wishes & thoughts are for u.xx.
May 17, 2018
May 15, 2018
May 15, 2018
Sending our love and prayers to you all. God bless
May 15, 2018
Sent With love,
May 14, 2018
Good luck, wishing you all the best for the future x
About the fundraiser
Haydon & Kayleb
Kingston upon Hull, Hull, UK
Our little brother is so special and we miss him so much, he was taken ill in february 2018 and we thought it was just a bit of cold. Even the Dr said it was just a virus and they are supposed to be clever.
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