Jason, 17, lives in Braintree with his parents, Stacey and Ryan, and his younger brother, Joshua, 14. He is a charming young man with a great sense of humour.
Jason was diagnosed with epilepsy after he had a seizure at just six months old. Later, tests showed that he has a condition called tuberous sclerosis which has also caused autism and learning difficulties, leaving Jason unable to talk. As he has got older, his seizures are more frequent and in clusters and he also has drop seizures where he falls to the ground.
Stacey explains: “Jason requires 24 hour specialist care as his seizures cannot be controlled and he can hurt himself when he falls. He is tall, strong and quite heavy and I have a bad back so it’s been harder to manage as he gets older.”
The family needed help but Stacey felt unable to trust anyone to care for Jason because of his complex health problems. Their social worker recommended The J’s Hospice.
“I didn’t have high hopes because Jason needs such a high level of specialist care. When the two J’s Hospice carers first came to visit, they asked me if trusted them to look after him and I said ‘no’ but they understood and their second visit went really well.”
The J’s Health Care Assistants now visit for three hours every week to play with Jason at home or take him out for a walk.
“They always stay calm and have amazing patience with him. The first time they took him out, I cried! To be able to trust someone to look after him has been life-changing for me and my family because I can recharge my batteries and spend time with Josh and Ryan.”
The family also has a J’s Specialist Nurse called Chris who helps to manage Jason’s health care and the range of support he receives. When Chris was going to meet the family for the first time, Jason had to go to hospital so Chris met Stacey there instead.
“It was great to have Chris with me at the hospital to help and talk to the medical staff. He is a great support – he phones the hospital and other organisations on my behalf and even arranged for Jason to have a new wheelchair.”
Jason also goes to The J’s Hospice Inspire! social group where he enjoys trying new things that he might otherwise miss out on.
The family had an amazing early Christmas present at the start of December when Jason was put on a new medication and started talking! Stacey said: “There are no words to describe waiting 17 years for your son to say ‘I love you’. He joins in our conversations with short phrases and teases Josh. Now his J’s carers help him to learn new words.”
The family find it hard to believe how much life has changed since last summer. “I know that I can call The J’s and there will be someone on the end of the phone to help me. Having this back-up has helped to keep Jason living at home with us.”
They are so grateful to The J’s Hospice that Stacey ran a sponsored 5K last year and Ryan is cycling in Pedal for The J’s to raise money for the charity. It is clear to Stacey how much the J’s Care Team means to Jason.
“When the doorbell rings, he runs to the door to meet them and is really happy. Although I know that The J’s Hospice carers look after a lot of people, when they’re with Jason they always make him seem like he’s the most important person, which is why I trust them.”
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