The added complication of Noah’s gastroparesis meant he had to have a nasojejeunal tube, (a thin feeding tube) fitted directly into his bowel for feeding, but sadly this too failed and his bowel rejected the tube. To fix this, Noah was again admitted to the hospital and began haemodialysis with a JPEG tube fitted to feed him directly through the wall of his stomach and into his bowel until his wound healed. This, again, was unsuccessful; and Noah had to change to parenteral nutrition directly into his bloodstream, which also saw his return to peritoneal dialysis. Unfortunately, this not only did not adequately clean his blood but also made his sickness worse. Noah is now back to receiving haemodialysis in hospital, three times a week.
Noah’s condition is not unique in his family. His younger sister, Ariel, was diagnosed with nephronophthisis in 2016 and is also receiving haemodialysis. With both suffering from the same condition, a geneticist was able to isolate the specific gene responsible, give them an exact diagnosis, and test their younger brother. His kidneys too will fail.
With the amount of time Noah was spending in the hospital, he explored a hobby he’s had since childhood, Lego. Sarah, Noah’s mum, said, “Noah has always loved Lego. From a very early age, he could look at any object, visualise it in Lego form, and then build it from the pieces he had in existing packs. To begin with, when Noah would show me what he’d made that day, I thought he was simply following the instructions provided in the packs. I was amazed when I found out he could pretty much make anything in Lego that he put his mind to.” As a child, Noah made a replica of a Dr Who Tardis, planes, rockets, and many more.
With so much time in hospital, Noah began to identify similarities in the machinery that surrounded him with some of the Lego pieces that he already owned. He soon embarked upon replicating his surroundings on the ward and created Lego Fresenius Medical Care UK & Ireland dialysis machines, which he gifted to the consultants on the ward for Christmas. It was not much longer before he created a Lego replica of the renal unit itself!
Of the newly medical nature of Noah’s creations, Sarah stated how grateful she was that her son had found an alternative way to challenge himself whilst he’s receiving his dialysis. “It’s so hard for Noah to make plans about his future, not only because he’s been so unwell, but also because the world’s been engulfed by a pandemic. Lego gives Noah the creative and challenging outlet that he craves, whilst also providing a necessary distraction from his treatment.”
Noah says he’d like to keep developing his craft and continue making even more wonderful Lego creations. The doctors, nurses, and all of us at Fresenius Medical Care can’t wait to see what comes next!