Help For Matthew

Matthew is an 11 year old boy from Ballymun Dublin. At the very young age of 6 months matthew was diagnosed with MPS II also known as Hunter's Syndrome this is a rare genetic disease it affects only 11 boys in Ireland and 2000 world wide boys with mps II are missing an enzyme called iduronate sulfatase which helps the body breakdown large sugars. Which leads to these sugars damaging cells in the body. Damage to these cells effects the body in many ways such as intellectly disabled may have an enlarged head, poor vision, coarse facial features, hearing loss, speech delays, carpal turnell, skin lesions, breathing difficulty, cardiac disease, enlarged organs, stiff joints and a significantly shortened life span (boys dont normally live past there teens). There is a treatment available its called Elaprase. Its a weekly infusion that takes up to 4 hours to be giving through a drip but unfortunatley the treatment does not reach the brain. So the treatment cant help the damaged cells in the brain. The treatment only lasts 3days before the liver processes it out. When Matthew was 2 years old he started this treatment he received it for 8 years but in August of 2015 Matthews mam Emma had to make the heart breaking descision to stop the treatment as it was not improving his condition and making him very uncomfortable and agitated. Matthew now being 11 years old his condition has deteriated extremely. His joints are becoming a lot stiffer and although he can still walk very short distances Matthew will eventually need he’s wheelchair permanently. Due to this his Mam Emma needs help she will soon need a vehicle which is wheelchair adapted as she struggles to carry him in and out of her own car. Matthew has many hospital appointments and also attends the amazing LauraLynn Hospice which he really enjoys. So please if you can help Matthew & his mam Emma in any way it would mean the world to them both.


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Matthew Mchugh 
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