Friedreichs Ataxia Disabled Young Woman Seeks School And Daily Living Help
by Ilima Nitta
(Portland, Oregon, USA)
My name is Ilima Nitta. I am 21 years old. I was born and raised on the island of Oahu of Hawaii. I am the youngest daughter out of four children.
I have moved away and now reside in Portland, Oregon to gain independence, as well as a change of scenery.
I was diagnosed with a rare, degenerative disease called Friedreich’s Ataxia at the age of nine. One in every 50,000 people in the USA alone has it.
The disease causes my muscles and nerves to deteriorate, leading to loss of control in the legs and arms, loss of fine motor skills, lost vision and hearing, slurred speech, scoliosis, a higher chance of diabetes as well as life-shortening heart conditions.
I have been slowly losing my ability to walk since I’ve gotten diagnosed, and have been using a wheelchair for 98% of the time within this last year.
There are currently no treatments or cures for those who suffer from Friedreich’s Ataxia.
I do not have enough funds to live on my own, or pay for school. I have a roommate who is my caretaker. He pays for his half of the rent, as do I.
I have the help of my family who help to pay for school. I have medical which covers my doctor visits and medication if I need them.
My roommate drives me to appointments or wherever I need to go.
I struggle to make sure I pay my bills on time, which include utilities, electric, Internet (for school), and my phone.
I do not have a job due to the fact that it is difficult to find a job when you are disabled, although I hope having an education will help that.
I receive SSDI and my financial hardship falls in the fact that it is difficult to obtain a job with my disability.
I receive $710 a month from SSDI and $189 from the state for cash benefits/food stamps. This is the only money I receive and it barely covers my rent and food each month.
I have applied for FAFSA for Summer 2014 - Spring 2015, although I am currently receiving help from my family for attending school right now.
I am seeking different school grants that I would be eligible for, as well as grants to help me with daily living.
I would also like to know if there are any other benefits that I am able to receive, as well as jobs or careers for me that will be a realistic choice with my condition.
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