Support tuberous sclerosis children

my son who was born with tuberous sclerosis complex 2 from birth until today (9months) life has changed is been such a challenge for us . With this condition there are a number of life changing events . Tuberous sclerosis complex (TSC) is a neurocutaneous genetic disorder with a high prevalence of epilepsy and neurodevelopmental disorders. His condition of
Tuberous sclerosis symptoms are caused by noncancerous growths (benign tumors), in in the brain, right eyes , heart,  and skin.he gets infintile spasms has epilepsy 
He started getting seizures at 6 months old which we put him on 2 seizures medication as of now we are hoping they are not failing us before we try another medication which is costly . We will be starting him with specialists for delayed development as he still cannot sit on his own he is 9 months old and is not verbal. We see specialists 3-4 times on a monthly basis from neurologist, cardiologist,optometrist, paediatric specialist ,epileptologists and Nephrologist  . This is all new to us and life has changed for us with more challenges and unexpectedness along side our future which we pray and hope for a cure . Thank you for any support to help us with Noahs health