Why is is so hard to get assistance?

[Guest guest]

Hello, my name is Barbosa and I have a 10 year-old girl

(Amber) who was diagnosed with Leigh's back when she was 1. I have

had the hardest time getting any sort of financial assistance and I

was wondering why this is. I keep running into road blocks because

her condition " isn't well known " We cannot collect SSI because our

income exceeds their guidelines. I have been working with Region

Valley Center and they only work with children who have Cerebal

Palsey, Epilepsy, Autism, or Mental Retardation. Even after telling

them that Amber could not walk or talk - they still said she does not

fall in their critera. I will need some sort of financial help in

the future in order to care for her full time. Can someone point me

in the right direction?