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Consistency of care is important for young Rory
28 June 2022

Rory was diagnosed with Hunter syndrome at just 4 days old and has been receiving medication all his life. His mum Sarah says he is very excited about going to school in September and having his weekly treatment there.

Rory, now 3, has been receiving a service from Sciensus since January 2019, after spending his first few months of life in hospital following a reaction to his medication.

Hunter syndrome is a rare genetic disorder affecting around 1 in every 100,000 to 170,000 males. Its symptoms can include stiff joints, breathing problems, delayed growth and hearing loss. There is currently no cure but enzyme replacement therapy (ERT) can slow progression of the disease and improve quality of life.

Rory’s mum Sarah said that the transition from hospital to services from Sciensus was very easy. The Sciensus nurse visits their home every Wednesday to administer his medication, which takes up to 6 hours. The nurse, usually the same one each time, stays throughout the course of the treatment and Sarah says she has become ‘part of the furniture’.

“The Sciensus nurse comes once a week,” she said. “Rory can play and do his daily activities as everything for his treatment is safely tucked away in his backpack. The nurse stays all day and we’re quite used to having her around. I just get on with chores around the house while she’s here.”.

Sarah says that she can ask the nurse about anything related to Rory’s condition and treatment, and the nurse can ask the hospital for more information if needed and get back to her. She adds that the Sciensus nurse goes above and beyond, for example getting in touch with the Rainbows charity to arrange sibling support for her 7 year old daughter.

“This all impacts on my daughter as well, and it’s great that she can now have time with attention focused on herself,” added Sarah.

Supporting the most normal life possible

“When the treatment is due, you can see that Rory is more tired, struggling with the stairs for example,” said Sarah. “You can definitely see the difference after his treatment, he has much more energy and improved mobility.

“Rory is amazing at coping with the nurse visits, but he knows no different. I’m sure the consistency of seeing the same nurse each Wednesday helps.

“Having his treatments at school from September will allow him the most normal life possible, although the change will be strange for me! He is so looking forward to going to school so this support from Sciensus is really important for him.”