Karl is 17 years old , he has numerous medical problems . He was diagnosed with Angelman Syndrome when he was 1years old .
Karl is an amazing strong happy young man he is our world . He has a lot of different medical problems. His diagnosis is Angelman syndrome but he also suffers with severe scoliosis ,epilepsy and is paralysed on the left hand side due to a stroke he had taken when he was just over one years old .
Throughout the years he has been in hospital on a regular basis and has pulled through many terrifying illnesses. Recently Karl has had quite a lot of recurring chest infections. We got further tests done and Karl's infections are due to aspirating . His fluids and his own secretions are causing him to aspirate . Which is causing pneumonia and regular infections. Karl's health is deteriorating quickly.
Doctors cannot do surgery to get a peg tube fitted for him for feeding as his scoliosis and chest is very bad. We have no options left . To be told that we cannot do anything else for your childs illness is just heartbreaking, no words can describe this feeling . We are looking after him at home and always have done so and Karl needs 24 hour care, his daily needs requires a lot of time and care.
Karl needs a lot of new medical equipment and extra care and treatment to keep his chest functioning as best as we can . Sadly Karl is now deemed as having a terminal/ life limiting condition. we are trying to raise funds for his ongoing care and medical equipment and trying to put a proper care plan in place for him as quickly as possible before the winter approaches, as during the summer months his condition was detiorating quickly and with the colder weather approaching this will no doubt get worse. We cannot be waiting on equipment to be applied for and passed or maybe not passed as it is quite expensive. He needs a c-pap machine which alone is 6,000 euro, suction machine and nebulisers daily as well as a lot of different medication for his care.
We are trying to keep our strength up and fight every obstacle that we have been faced with to keep our beautiful smiling boy as healthy as we can . Everyone that knows Karl just adores him , he is so happy and would light a room up with his beautiful big smile . We hope we can get the care he needs without a continuous battle looking and waiting for all the equipment and treatment he needs .
Thank you for taking the time to read our story , we will keep the page updated with Karl's progress hopefully more good times than bad in the coming future. We have to hope for the best and take each day at a time .