NOAH & FREDDIE

When Noah and Freddie came into the studio we had so much fun. They are lovely, playful boys who were happy to dance and throw themselves into the whole experience no matter how tired they were.

Noah and Freddie both have x-linked periventricular nodule heterotopia. They also have epilepsy, bronchiectasis & bronchomalacia of lungs, mitral & tricuspid valve regurgitation of heart, chronic intestinal pseudo-obstruction of bowel and hypermobility. In short, they are both very poorly little boys that try very hard to live life to the full.

We asked Noah and Freddie’s’ parents about their experience of living with the boys rare conditions:

“The boys have to go through a rigorous daily routine of nebulisers, physio and medication and regularly stop what they’re doing to complete their stoma care. We try hard to keep their life as normal as possible but it’s a balancing act of wanting to allow them to act like typical boys whilst at the same time recognise their limitations”.

“They can both be quite accident prone and more vulnerable than an average child their own age. Both of their conditions can change in an instant and it can become quite serious very fast. This constant need to be on hand does cause restrictions for us as we are unable to go very far from places like the boys school, in case there is a medical emergency”.

When we asked the boy’s parents why they felt raising awareness was important, they responded:

“It is important the people know that not all disabilities are visible. In our situation, we shouldn’t have to list our children’s conditions to strangers who question why we used disabled parking or toilets”.