Fundraising
9th June 2022
Jason is a 32 year old man who lives in Northern Ireland. He loves going to the day center near to where he lives and getting an occasional day trip to the amusements. The ghost train is Jason’s favorite ride.
A diagnosis of Spina Bifida was confirmed at Jason’s birth. During his younger years several other conditions including Epilepsy and Autism were also added to the list. He also had a benign Brain tumor removed at 9 years old. As a result Jason has very complex needs which require careful and constant management. His sensory issues limit who can provide care for Jason as well as restricting a range of procedures that are required to keep Jason safe and healthy.
Jason’s mother Linda, has spent all of Jason’s life looking after him.
She has continued to follow directions from the Spina Bifida, Neurology and Urology Consultants and managed to keep Jason in good health all through the years. She works continuously to make Jason as independent as possible and has been very successful in getting Jason set up in his own living accommodation. Linda manages a rota of carers to help look after Jason some of the time but the bulk of the care falls on Linda herself. Linda has had to fight to get care packages from direct payments and ILF though Jason has to contribute £98 a week to this
Not only does Linda take care of Jason’s physical needs but she also has to be observant and act as Jason’s voice when it comes to knowing when he is unwell, if he is in pain, work out what the issue may be, when he is building up to a seizure, etc, etc.
Recently Jason has required several emergency admissions to hospital. This is very traumatic for Jason and Linda but also means Linda has to stay with Jason for the duration of his admissions. Constant monitoring is required and often chasing after medical staff to ensure Jason gets his medications on time reducing the onset of seizures. Also trying to keep Jason settled in hospital against his will and entertained for the duration of his stay is very stressful for Linda.
As Jason can not decide what procedures are appropriate for himself, it is up to Linda to have input in all of his care. Often Jason’s sensory issues are not taken into consideration and Linda’s vast experience of how he reacts in certain situations is required for a positive outcome.
All of this comes at a vast cost to Linda herself, physically, mentally and financially. Her own work has to be arranged around Jason’s needs and set aside when he has a hospital appointment or admission. Jason’s siblings also require input from Linda as well as her grandchildren.
Jason and Linda have been involved with Shine (formerly ASBAH) from Jason was 2 years old. Occasionally Shine have been able to help Linda with letters of support, some medical information, etc.
Linda asks for assistance when she requires but always puts Jason’s needs before her own and could never be paid for all of the unseen care and work she carries out on a daily basis behind the scenes.