Richard's Life and Everyday Battle
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Richard is a beautiful 6 year old boy suffering from Aicardi Goutieres Syndrome. Aicardi Goutieres Syndrome is a devastating extremely rare, degenerative, incurable disease which affects the brain, immune system, and the skin. The course of the disease is severe and progressive where death occurs in 25% of patients before 17 years old. There are only 9 known cases living with this disease worldwide. Out of the 9 children Richard is the most significant case causing him substantial damage to his basal ganglia which is the motor skills of his brain, in result of this it has left him completely immobile and disabled.
Due to this monster disease, Richard has no communication skills where he will never be able to walk or talk. He has professional physiotherapy and speech therapy several times a week through the Cerebral Palsy Alliance to help with a range of movement in his head, arms and legs as well as trying to help him communicate through sound and eye contact.
Richard’s needs are very high and require 24 hour care for all his activities of everyday living. His condition is affecting his brain and his movements, causing him to be distressed most of the time. When he is distressed his movements increase, his body’s muscles tense and he arches his back where he needs to be carried to help settle his distress. He has no head control, making it difficult for him to be well supported without specialised equipment.
He is fed through a gastrostomy tube peg for approximately 22 hours a day continuously. He is also regularly suctioned up to 15 times a day on a good day and up to 30 times on a bad day when he is sick. He requires a nebuliser twice a day for his continuous respiratory tract infections. Richard also requires home oxygen on a day to day basis to help him breathe.
Due to this condition Richard has an extremely low immune system in which something simple as an everyday bug such as a common cold or fever could risk Richard’s life and has often caused Richard several life threatening hospital admissions. Therefore he needs to be at home most times to so he is not at risk of catching anything.
As Richard is immobile and has no weight bearing, this has caused his hips to dislocate which gives him extreme pain. As a result in 2012, he has had hip surgery to try and place his hips back into place. There is a possibility that he will require a hip reconstruction in September this year to permanently lock them in place so they don’t dislocate again. However this is not guaranteed to happen as there is a high risk he will not survive the major surgery due to his respiratory condition.
Richard’s medical needs are expected to progress and he will require more supportive equipment at home as he grows. As he needs specialised 24 hour care, Richard’s mother is not able to work which has caused a financial strain on the family as they are struggling to meet their daily needs. It is expected he will need further hospital admissions as his needs are complex and he is required to be brought to hospital with any sign of health deteriorating, putting him at risk. Your support with Richard’s cause will help his family relieve some financial stress and enable them to purchase new medical equipment as well as a car to be able to transfer him and accommodate his wheelchair when he needs to go to school, therapy and hospital.
Due to this monster disease, Richard has no communication skills where he will never be able to walk or talk. He has professional physiotherapy and speech therapy several times a week through the Cerebral Palsy Alliance to help with a range of movement in his head, arms and legs as well as trying to help him communicate through sound and eye contact.
Richard’s needs are very high and require 24 hour care for all his activities of everyday living. His condition is affecting his brain and his movements, causing him to be distressed most of the time. When he is distressed his movements increase, his body’s muscles tense and he arches his back where he needs to be carried to help settle his distress. He has no head control, making it difficult for him to be well supported without specialised equipment.
He is fed through a gastrostomy tube peg for approximately 22 hours a day continuously. He is also regularly suctioned up to 15 times a day on a good day and up to 30 times on a bad day when he is sick. He requires a nebuliser twice a day for his continuous respiratory tract infections. Richard also requires home oxygen on a day to day basis to help him breathe.
Due to this condition Richard has an extremely low immune system in which something simple as an everyday bug such as a common cold or fever could risk Richard’s life and has often caused Richard several life threatening hospital admissions. Therefore he needs to be at home most times to so he is not at risk of catching anything.
As Richard is immobile and has no weight bearing, this has caused his hips to dislocate which gives him extreme pain. As a result in 2012, he has had hip surgery to try and place his hips back into place. There is a possibility that he will require a hip reconstruction in September this year to permanently lock them in place so they don’t dislocate again. However this is not guaranteed to happen as there is a high risk he will not survive the major surgery due to his respiratory condition.
Richard’s medical needs are expected to progress and he will require more supportive equipment at home as he grows. As he needs specialised 24 hour care, Richard’s mother is not able to work which has caused a financial strain on the family as they are struggling to meet their daily needs. It is expected he will need further hospital admissions as his needs are complex and he is required to be brought to hospital with any sign of health deteriorating, putting him at risk. Your support with Richard’s cause will help his family relieve some financial stress and enable them to purchase new medical equipment as well as a car to be able to transfer him and accommodate his wheelchair when he needs to go to school, therapy and hospital.
Organizer
Peter Abboud
Organizer
Saint Clair, NSW