Michaelsvoice-Michaelsjourney

this is my nephew Michael who is 9 years old. he was born prematurely at 32 weeks.Michael has had a very long and lengthy battle spending 5 months in neonatal unit from birth. Michaels only complication that we were aware of was his club foot which we found out at his 20week scan. After Michael was born trough an emergency caesarean and him being very little weighing 2lb 10oz nothing could prepare us for the road ahead it seemed to be everyday the doctors were telling us of new complications Michael was facing. Michael has been named under SWAN SYNDROME which is a SYNDROME without a name Michael has parts from a wide range of different syndromes so he cannot be diagnosed under a certain syndrome so there is no diagnosis for him doctors have not seen a child like Michael with his problems or features. Michael underwent numerous surgeries on two occasions was for server reflux this caused Michael to choke on his own sick and his heart stoped thankfully the nurses worked on him and managed to get him breathing again. Michael has stopped breathing on countless occasions Michael also was fitted with a feeding tube into his stomach for the next 3 years Michael was fully fed using this device. Michael was born with a server club foot which has left him with life long difficulties with walking everyday. one of the biggest struggles Michael has is he can’t not communicate Michael only receives 1 hour every month of speech therapy which sadly isn’t enough for a child who cannot communicate at all. Michael being the happy bubble friendly little man he is and everyone he comes into contact with he just wants to talk and tell them everything he has to say but sadly no one can understand him. We are trying desperately to raise these funds for Michael to be able to communicate to finally have a voice so he can say what he needs’wants and feels. Michael needs a chat fusion touch chat device. By Michael having this it will open up a whole new world for him it will give him the ability to achieve the basic daily needs that we take for granted. Michaels fight is still not over for him as he do not know what Michaels future holds. Please help Michael to finally have a voice


Michael is still undiagnosed
Michael still can’t speak
Michael has dysmorphic features
Michael can’t cry
Michael is missing partial frontal lobe
Michael has foot talipes

We are looking into a very rare genetic disease for Michael we are awaiting test.
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Organizer

Katie Lou 
Organizer
New Malden, Greater London, United Kingdom
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