27 May 2022
When Ronnie, 8, was diagnosed with Hunter syndrome in August 2016, he received treatment in hospital at first. His mum Chloe says that switching to treatment at home has made a real difference to their lives, allowing them more freedom and flexibility.
Hunter syndrome is a rare genetic disorder that affects physical and mental development in around 1 in every 100,000 to 170,000 boys.
The symptoms usually appear between age 2 and 4 and can include stiff joints, breathing problems, delayed growth and hearing loss. There is currently no cure but enzyme replacement therapy can slow progression of the disease and improve quality of life.
Ronnie, from the North West of England, first received his medication infusions in hospital, on a ward dedicated to children with genetic diseases, before being switched to treatments at home with Sciensus.
“At first the treatment would last up to 8 hours and the nurses were able to deliver it to Ronnie at school once a week,” said mum Chloe. “When the coronavirus pandemic hit, the nurses started visiting Ronnie at home instead and he’s been staying off school for the day. I decided that to make life easier for us all, I would take on the task of monitoring his infusion and removing the needle at the end of the process, so that we could just get on with our day.”
The Sciensus nurses trained Chloe in making sure the infusion goes well and what to do if there are any problems. She also learned how to remove the needle and dispose of the kit at the end of the day. This means that the nurse doesn’t have to stay with Ronnie in the house all day – instead he and his mum can enjoy going to the gym together or go shopping instead, with Ronnie’s medication and kit kept safely in his back-pack.
Chloe said: “The Sciensus nurse puts the needle in and starts the infusion then I take over, so the nurse is only with us for around 45 minutes. All the Sciensus nurses have been brilliant; I can’t fault them.
“Receiving treatment in this way means that Ronnie can just get on with what he enjoys with minimal disruption to his week – going to the cinema, playing on his trampoline, visiting the park or cycling – he even enjoys going to yoga.
“When we were moving from having treatment on the ward, I was really sad to lose the links with the hospital nurses there as I was really attached to them, but it was the best thing we ever did, and I would really recommend Sciensus. Their service is less disruptive to our days and we can just get on with our lives.”
