Tuberous Sclerosis Complex

The Maybe Disease.

A congenital disorder that affects 1 in 5000 people (or thereabouts).  This causes the body to grow tubers (tumors) on all organs. TSC Canada and the TSC Alliance are a wealth of information.

Our Bup (R) was diagnosed with TSC at 14mths of age after seizing since 8 months old. Rhett has tumors bilaterally throughout his brain, his right eye close to the centre of the retina, between the chambers of his heart, kidneys and on his face, facial angiofibromas. The first side effect R has is seizure activity which is barely controlled by meds; Trileptal & Topomax.


The seizure activity and tuber placement has caused a mild speech delay, moderate-severe fine motor, severe gross motor delay, Auditory Processing Disorder and ADHD.

In June 2011, R underwent a Temporal Lobe Resection; removing his right Temporal Lobe and Hypocampus as they were so riddled with tubers and the seizures stemming from this area were not responding to meds.

We are ever so grateful that R is doing as well as he does, but it is always a load on our hearts as we watch this wonderful little boy live with the "Maybe Disease".