Connor, who’s 8 years old, has participated in two clinical trials now.
The first was a 1b trial. It was quite hard going with lots of intrusive tests and overnight stays for two weeks.
The second was a phase 2 trial, so not quite so intense. We had quite a few visits and a few overnight stays in the year he participated.
Connor had two muscle biopsies, which were a little larger than we expected. He was out of hospital the same day. The pain wasn’t an issue afterwards for him and they both healed nicely with no trouble.
He has been an absolute trooper in taking part, hardly ever moaned and took everything in his stride.
We had a few difficulties with giving blood but his advice would be no cream or spray, choose the bounciest vein, drink lots of water beforehand and keep the area warm.
He is now on the extension phase of the trial so there are fewer visits now. We go to Great Ormond Street Hospital every six months for the trial and have a home nurse visit occasionally.
All our expenses have been paid for including hotel stays, meals, drinks and tickets, which is excellent and definitely helps financially.
We’ve made some amazing friends in the nurses, doctors, parents and patients with Duchenne. Connor used to look forward to the popcorn and movie nights with his new friends in the clinical research facility.
We are extremely proud of Connor and the way he has handled it all for the past few years. He also likes the fact he’s helping the scientists to find a new medicine to help all the kids out there with poorly muscles. He’s our hero!
Without families and the children with Duchenne participating in the clinical trials, we wouldn’t be as close as we are now in finding a possible treatment. So our advice would be get enrolling, there’s not a lot to lose and lots to gain……let’s find the drug that works!