When Jonathan and his wife Danielle first contacted CLDF almost six years ago, it was to get information on biliary atresia, as baby Otis had been diagnosed with the condition at five weeks old. Although he had a Kasai just two days later, it was not a success and just before his first birthday in December 2018, Otis underwent a life-saving transplant when Danielle donated part of her liver.
Now he’s an active six year old and Jonathan and Danielle want their story to give hope to other newly diagnosed parents.
“Otis settled into school really well and has a full social circle of friends,” says Jonathan. “The school are fantastic. We gave them the CLDF education pack when he started and they refer to it regularly, which makes our life a lot easier.
“Otis still has a distended stomach following his transplant but that doesn’t stop him getting stuck in and involved with everything. The school are really good about informing us if anyone has a bug or illness and I must admit we still get a little worried when we hear a child Otis has been in contact with has something like chickenpox or scarlet fever. Thankfully, however, as Otis has settled in, the other parents have become better at looking out for him.
“Otis’ journey has been anything but smooth and he is currently under investigation for esophageal varices because his portal vein is blocked and the spleen is enlarged. This doesn’t stop him being active though. We just have to be careful with impacts to his stomach so we don’t let him play rugby or contact sports. Other than that, Otis doesn’t let anything stop him and is full of energy.
“He loves doing performance and dance as well as gymnastics and is hoping to start street dance soon. He is just getting into skateboarding and has had some lessons, so he’s constantly black and blue with bruises from falling off, but he gets straight back up and keeps going.
“It was great at the Transplant Games to see him with his own little network of friends who have been through the same thing and of course through our own experience we also have a network of families where we can ask the daft questions and support others who need some help.
“My advice to any parents in our situation is your children are stronger than they look, ask as many questions as you can think of and ask for help. There’s so much support available – from CLDF and from other families. Don’t think you’re alone. Whatever you’re going through, someone out there has probably been through something similar.”
