hanna-hughes
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Hi everyone. I've just joined and wanted to introduce myself. My names hanna, I'm 23 and live on the isle of man (UK). Im married with 2 beautiful sons, Harvey who's 4, and Leo who is 11weeka. I also have a step daughter, Emma, who is 5.
Harvey was diagnosed with tuberous sclerosis complex and epilepsy when he was 3 weeks old. He spent months and months in hospital and at 5 months he was diagnosed with west syndrome. The tsc has made non cancerous tumours grow on the brain, in the heart and in his kidneys.
At 8 months he was diagnosed with wolff parkinson white syndrome (heart condition) and aince then has had problems with eating, vision, seizure control and a hole host of other issues. He was diagnoses with phenotype lennox gastaut syndrome a year ago.
He was starting to develop and looked like he would learn to walk independantly and started talking . He had swine flu last Xmas and since then he has deteriorted so badly he can't hold his head up most days and is in his wheelchair or bed all the time. He is constantly getting pneumonia or chest infections and the doctors have told us if its not eilepsy it will be his chest that will end his life. He has a very short life expectancy because of all these issues and is now oxygen dependant and peg fed as can't swallow. It's getting so hard and news people to talk to who know what its like which is why I have joined the site. I look forward to speaking to u all soon x x x :e:
Harvey was diagnosed with tuberous sclerosis complex and epilepsy when he was 3 weeks old. He spent months and months in hospital and at 5 months he was diagnosed with west syndrome. The tsc has made non cancerous tumours grow on the brain, in the heart and in his kidneys.
At 8 months he was diagnosed with wolff parkinson white syndrome (heart condition) and aince then has had problems with eating, vision, seizure control and a hole host of other issues. He was diagnoses with phenotype lennox gastaut syndrome a year ago.
He was starting to develop and looked like he would learn to walk independantly and started talking . He had swine flu last Xmas and since then he has deteriorted so badly he can't hold his head up most days and is in his wheelchair or bed all the time. He is constantly getting pneumonia or chest infections and the doctors have told us if its not eilepsy it will be his chest that will end his life. He has a very short life expectancy because of all these issues and is now oxygen dependant and peg fed as can't swallow. It's getting so hard and news people to talk to who know what its like which is why I have joined the site. I look forward to speaking to u all soon x x x :e:
