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Amanda Poole hasn't added a story.
My sons name is richard and on january 1st 2009 richard collapsed.after doing some tests at the hospital he was diagnosed with a Arnold Chiari Malformation..which is the cerrabellum part of the brain has herniated into the spinal cord and is squashed up against the brainstem causing richard to collapse with no warning and we were also told it was a birth defect after 26yrs we had foind the cause to what we thought was richard being clumsy. .on the 23rd june richard was admitted to Addenbrokes to undergo decompression surgery on the 24th of june 2009....we were told surgery had been successfull..phew..but the the next day richard suffered breathing problems and by that evening was rushed into intensive care and ventilated and sedated...after a while they tried to extubate this failed 3times so a tracheostomy was performed bedside..richard had a cardiac arrest while this was being done..2days later richard spiked a temperature and lumber puncture was performed..resulting in high pressure and infected csf..the morning richard was due to have a drain inserted his op was pushed back due to emergencies...that morning richard fitted abd unbeknown at the time the fit had kinked his brainstem at the pons medulla (this part deals with the breathing, swallowing, coughing and gagging reflexes)...my son is disabled for life...hes been in hospital for 4+years and im fighting to get him home..my property can not be adapted as its too small..richard suffers from constant chest infections and non-responsive episodes where he can be out from 5 mins to the longest so far is 7hours..these episodes are like narcolepsy come without warning...
I would like help to raise some money so richard can have a specialist bath installed in to the suitable property when we get it..also a 2nd hand wheelchair accessible van so I can take richard away from the care home/hospital in to the everyday world and also the acute hospital bed and nimbus3 air pressure mattress he needs...richard will have the tracheo in for life..cannot speak because of this..cannot walk and needs 24/7care and carers..I his mother has been with him throughout this journey and will continue to do so. ..I have 3 other children 2 of whom have Adhd and aspergers syndrome..Please help me give Richard the quality of life he deserves...Thank You..Amanda
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