Henry and Freddie Spink
Donation protected
We are fund raising for Henry and Freddie Spink who are both severely disabled. Henry is 32 and Freddie is 28. They live at home full-time with us.
Henry has multiple seizures both day and night and we have been warned of SUDEP [sudden unexpected death from epilepsy]. He has emergency epilepsy medication and has to be monitored at all times. He cannot walk or talk and needs all personal care including feeding. He is doubly incontinent. He is awake each night due to epilepsy, lack of continence or is just awake and needs attention. He has difficulty maintaining temperature. He has profound and multiple leaning difficulties. Every aspect of his life is organised by us. He lacks capacity.
Freddie is profoundly autistic and needs help with all personal care. He has a restricted oesophagus due to having been born with a diaphragmatic hernia that needed surgery at birth and spent 6 weeks on full life support. While on life support he suffered a stroke. The restricted oesophagus means every mouthful of food has to be prepared in a way that he can swallow it or he can potentially choke and has to be admitted to hospital for emergency surgery. This has happened 6 times and is life threatening. He has limited mobility and some speech. He is up through the night needing the loo, or being very busy. He needs monitoring all the time. He has behavioural issues and suffers from anxiety. All aspects of his life have to be organised by us. He too lacks capacity and has severe leaning difficulties.
We are up between 2 and 6 times a night supervising and meeting the boy’s needs.
We are truly struggling to meet the boys needs at this very difficult time. All day centres have been shut and the pressure to keep the boys safe, full-filled and entertained when they do not understand is incredibly hard. Especially with very limited resources.
Funds are continually needed throughout the year for the care of the boys. We need help with the overwhelming annual expenses.
For a documentary on the family shown on UK television, see: http://www.youtube.com/watch?v=Ci0W0Ix8pVc&feature=youtu.be
Henry has multiple seizures both day and night and we have been warned of SUDEP [sudden unexpected death from epilepsy]. He has emergency epilepsy medication and has to be monitored at all times. He cannot walk or talk and needs all personal care including feeding. He is doubly incontinent. He is awake each night due to epilepsy, lack of continence or is just awake and needs attention. He has difficulty maintaining temperature. He has profound and multiple leaning difficulties. Every aspect of his life is organised by us. He lacks capacity.
Freddie is profoundly autistic and needs help with all personal care. He has a restricted oesophagus due to having been born with a diaphragmatic hernia that needed surgery at birth and spent 6 weeks on full life support. While on life support he suffered a stroke. The restricted oesophagus means every mouthful of food has to be prepared in a way that he can swallow it or he can potentially choke and has to be admitted to hospital for emergency surgery. This has happened 6 times and is life threatening. He has limited mobility and some speech. He is up through the night needing the loo, or being very busy. He needs monitoring all the time. He has behavioural issues and suffers from anxiety. All aspects of his life have to be organised by us. He too lacks capacity and has severe leaning difficulties.
We are up between 2 and 6 times a night supervising and meeting the boy’s needs.
We are truly struggling to meet the boys needs at this very difficult time. All day centres have been shut and the pressure to keep the boys safe, full-filled and entertained when they do not understand is incredibly hard. Especially with very limited resources.
Funds are continually needed throughout the year for the care of the boys. We need help with the overwhelming annual expenses.
For a documentary on the family shown on UK television, see: http://www.youtube.com/watch?v=Ci0W0Ix8pVc&feature=youtu.be
Organizer
Henrietta Babington Spink
Organizer