Holt Oram Disabled 21 Year Old Man Seeks Education Grant Money
(Palm Coast, Florida, USA)
I am a 21-year-old male with a wonderful family who is supportive in all aspects of my life and who push me to do my best, even when I don't believe in myself.
I also have a beautiful girlfriend who I have been in love with for 3 years who makes me smile every time I see her.
My disability is called Holt-Oram. It is a disorder that affects upper limb formation, as well as the entire bone and muscular structure of the torso, and heart formation in the form of an atrial septal defect.
Generally, there are four classifications of severity for Holt-Oram, ranging from undetectable, which is level 1 and progressing upward to 4, the most severe.
My classification is 4, which as stated before, is the most severe and noticeable.
My left arm is approximately 12 inches long without an elbow. My left hand has three fingers with limited mobility and arthritis, especially in the wrist, which also affects the right arm and hand.
My right arm is longer than the left but still not the length of a non-Holt-Oram arm. I have a severely clubbed wrist that limits mobility to a great degree.
My right hand has four digits that cannot bend to nearly any extent. This causes difficulty in grasping and manipulating objects such as utensils.
One of the digits on the right hand is approximately an inch in length and cannot be moved at all. It was originally attached to another finger but was removed and reattached in the thumb position at my mother's request.
The option that the doctors would have taken would have been to throw the finger away, seeing it as not useful in any way.
Arthritis pain in both arms and hands causes me to have to stop doing tasks frequently until the pain passes. Then I can finish whatever I was doing: writing, typing, driving or brushing my teeth.
The heart defect causes the most health issues as without a stint put in, which I haven't done yet, my life expectancy has been estimated at 50 years old.
Due to the heart defect I also get frequent migraines. When they happen, I have to lie down and sleep for the rest of day, as sleeping is the only thing that allows them to pass.
I am considered permanently disabled with my arthritis and heart defect affecting my future health to an unknown, yet likely debilitating, degree. Everything stated above is what I was born with.
Due to my disability I haven't been able to hold a job for any great length of time, which leaves me with little in regards to money for bills, adaptations, a car, and schooling.
As it is, my health insurance from the government hasn't kicked in. So I have to wait to get the stint put in my heart along with regular checkups from a doctor or dentist.
I have had a couple of part time jobs, starting when I was 16 years old. Unfortunately all of the jobs I have held I have had to quit due to the tasks that the job involved, such as lifting dog food, manipulating money as a cashier, and taking phone calls and messages.
These tasks were very taxing on me, even though I hate to admit it. The money that I got usually came from my sister, especially as I got older so that I felt some independence from my parents who were also having financial issues.
My going out with friends was rather limited as my sister only had a part-time job that didn't pay enough to support two people and their bills.
As of now I don't have a job and am relying on Social Security for any money that I receive.
My parents both have health issues, which forced them into government assistance also, but they still provide all that they can and remain positive and supportive despite such situations.
I am hoping to be able to get back into school to get a job in the technology field, which I have an appreciation for. Computers and assistive technology were the reason I was able to go through elementary and high school.
In hopes of going back to school I'm looking into any grants that may be able to help. If I go back to school and earn a high enough degree I can get a job that allows enough financial freedom for me to feel comfortable and fulfilled.
For the moment, my goal is school but someday I would like to lend as much experience, ideas, and support toward assistive technology as I can, in hopes that others will benefit from it.