When Jonathan and his wife Danielle first contacted CLDF, it was to get information on biliary atresia, as their baby son, 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 eight year old and Jonathan and Danielle want their story to give hope to other newly diagnosed parents.
“Health-wise, Otis is doing really well,” says Jonathan. “He does have some complications with the plumbing part associated with the transplant and has regular banding for varices, which requires him still to be put to sleep. He is prone to anaemia as a side effect of the varices and plumbing.
“He settled into school really well and has a full social circle of friends. We gave the school the CLDF education pack when he started and they refer to it regularly, which makes our life a lot easier. The school have been brilliant and are really good at informing us if another pupil has come in with a bug or illness.
“However supportive the school is, though, Otis would generally prefer to be at home with his parents. We think this is maybe because he was so poorly as a baby that he always had us at his hospital bed, so he does struggle with separation and anxiety.
“This doesn’t stop him being very active outside school though and he really is full of energy. We 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. He loves doing street dance classes, gymnastics, football and swimming. He’s even got into skateboarding which can make him black and blue with bruises from falling up but he just gets straight back up and keeps going!
“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.”
