appealing for help.... My son koby was born on the 5/08/2017 2 weeks early after giving birth found out that he was struggling to breath and was grunting so was rushed down to intensive care and was put on 95% oxygen. the team at musgrove in taunton somerset was amazing and saved our baby without them he wouldnt be here today. He was born with a rare condition which is bilateral cataracts which was removed at 5 weeks old after a 3 hour operation which then caused glucoma, he’s had a tube operation for that and undergoes regular visits to London and exeter hospital for treatment and care he is on 8 different drops daily and medication . He is now registered blind as they don’t know what vision he has and is not following Or focusing as he should we haveJust found out he has chromosome 11 disorder and is extremely floppy and behind in development, this can also cause serious health conditions With his brain or kidneys. Currently awaiting a MRI brain scan to see if there is any other issues with the brain such as tumours, disabilities, brain damage or any other problems. Have been told it’s a long wait on the NHS as parents we are extremely worried he screams in a lot of pain at night for hours on end for no reason there is no way of settling him this is causing big concerns as I’m not sure why or where he is in pain, I am writing to ask for your help to try and get my son koby scanned as soon as possible as I don’t think this amount of time is acceptable when he is in a lot of pain so i am asking for people to please help and support koby and give my son the private care that he needs. he is also being reffered through genetics to help and discover the chromosome disorders. He will need to go under anesthetic for this scan due to his age which i simply cant afford being a mum to two with all the hospital appointments and treatment All donations will be extremely appreciated and will help put our minds at rest as to why he is in such pain and we can get kobys scan booked.

update- we have found out koby is the only child in the uk with a duplication of chromosome 11 band 11p 13 and there is no information on it but he has potential abnormal brain scrutcher looking at mid aug for his brain scan.

from the second he was born - now

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