Weʼre raising £6,000 to help pay for a MRI scan and tretment/treatments for my little boy Alfie he has a suspected rare gentic form of cavernomas.
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Hello. First of all I would like to thank you if your here reading this..
We as a family are trying to raise funds for treatment/treatments for my 6 year old little boy Alfie. He is currently been tested for hereditary cavernomas , a rare gentic condition. We have been told by the consultant that he is 99.9% sure it is familial cavernomas...
It all started with a simple routine eye test for Alfie. His teacher asked does he need glasses? It had become apparent that he was really struggling with his work at school. He had slipped back drastically with his work from year 1 to year 2.
He was due his routine eye test so i booked him in, which resulted in been sent to E&T for an emergency appointment as a weird abnormality was picked up in the retina/brain..
I was not happy. They said Alfie had a bleed/haemorrhage on his brain (pictured) they said they had no idea why it was there and that it was very strange. They said they would keep an eye on it and do a follow up appointment in 4 months and would request an MRI scan. This will take WEEKS!!
I was not happy with the consultants opinion as i had been told Alfie had an heamorrhage/bleed on the brain.
Whilst waiting for appointment day, it become apparent that Alfies dad is in the process of been tested for a rare gentic condition "cavernomas" as Alfies step brother suffers really bad with them (can't go in to a lot of details as not my child) but it is making it look more like Alfie does have these hereditary form of cavernomas.
We went for the second opinion to pass on all the information about the hereditary cavernomas. Loads of consultants looked at Alfies eyes/brain on scans they took loads of pictures, they requested Alfie to go back in a few days to meet with a gentics consultant.
So we go back for a third time, the gentics consultant looks at everything and says he reckons looking at all the images and info he has he is 99.9% sure Alfie has this cavernoma disease..
I do not know a lot about the disease but i have done a lot of research and sometimes these growths can be ok but in some cases when it is a hereditary form it is not always ok!!! And can have devastating neurological effects which Alfie is already showing signs of.
Depending where these cavernomas are and where they sit on the brain and the amount of them if theres any more than the one ? depends on the out look for my boy. I just want answers and quick. The nhs can not do it that quick as waiting list are so long and funding ect.. I have basically been sent away and been told my baby has a bleed on his brain and to expect seizures at some point which can be LIFE THREATENING!!
I just want the best chance for my gorgeous little man and the only way is going private as medical insurance does not cover pre-existing conditions!
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