Blog

Through the Rare Project we introduce you to the people behind their rare conditions.

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.

The boys have to go through a rigorous routine daily of nebulisers, physio and medication.  They also have to regularly stop what they are doing to complete their stoma care.  Even though their parents try hard to keep their life as normal as possible, it is a balancing act of wanting to allow them to act like typical boys and yet at the same time recognise their limitations.

People can be extra cautious around the boys, when they realise about their medical conditions.  They can both be quite accident prone and more vulnerable than an average child their own age.  The condition of each boy can change in an instant and it can become quite serious very fast.  This constant need to be on hand causes huge restrictions on the parents and they often find they are unable to go very far from places like the boys school, in case there is a medical emergency.

Noah is a happy, caring and loving little boy with a zest for life.  He loves playing with his soft toys and Lego figures.

Freddie is a sensitive sole with a cheeky side to him!  He loves to spend time with his family, playing cricket and competing against his brother on the Wii.

"It is important that 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 use disabled parking or toilets."

The family have had support from Diversions (Bowel and bladder dysfunctions) http://www.diversions.org.uk and Sebastian's Action Trust an organisation for those with life long and terminal illness http://sebastiansactiontrust.org/

You can meet more people who have taken part in the Rare Project by clicking here.