I can't seem to thank anyone enough for this whole thing. I've always been slightly ashamed of my situation in my disability. Most of my closest friends don't even know the situation or the health problems that I have. I was born with the Holt Oram syndrome. It starts with the deformation of the heart, and ends at the extremities. Meaning the shoulders, arms, and hands.. It also effects the muscle structure, that I am missing quite a few sets of, as well as certain tendon groups that Are missing throughout my body.
Last year my condition became worse when I was diagnosed with another later in life reaction to this syndrome.. I fell into congestive heart failure, which I still have. I was also informed I now have cardiomyopathy. This is the constant hardening of my heart.. Without the five medications that I am on, I would surely not last too long..
Last year my lungs filled with fluid and I was admitted into the hospital... Now with the right meds and proper diet I'm able to control this part of my syndrome, thank God..
I'm not writing this for anyone to feel sorry for me, I do not feel sorry for me!!!
I'm writing this to thank Erik McCornack, and all my friends who have spoke up about it..
I will get through this situation one way or another!!!
My problem is that I've always been on disability, i've been blessed yet hated it my whole life. I've never been proud, and always ashamed of it.
I've done all I can, all my life to act as if I'm like everyone else..
I've always wanted to contribute to society and give back to what I've been given over the years. A few years ago I was offered a job by an amazing company with amazing people who love me and are my family, as well as McCornacks.. I'm blessed for this!!
I was tired of sitting home for the last 20 something years receiving benefits and not able to contribute anything back. Yet I also wanted to better my quality-of-life.. It's literally impossible for someone to live on $1200 a month. I've made a grave mistake of not knowing the stipulations and regulations which border this. Now I have lost all my medical and any funding that I might have ever had, also owing $22,000 to this. Added to having my 11th pacer maker.. It seems a person born with their disability is only allowed to make $1040 more than the allotted money that they are given each month to live. I'm not complaining about what I've been given or what I've been blessed, though what I do complain about is the fact that anyone born with a disability in this country will never be able to buy a house, or go on a vacation, get buy their own new car, or contribute to society. For the fact that if they make too much money..
This means that every person born with a disability, has a salary cap. Also if you're born with a disability in this country and you fall in love with a beautiful healthy young woman and she wants to marry you,once you slip the ring on her finger to show your undying love for her you lose everything you've ever had in benefits or help. These are the things I'm upset about, these are the things I feel that are unfair.
It's not me I'm concerned or worried about, I'm somebody capable and slightly able to do what I can. I work for a great company who understands my problems and gives me time off when I needed or I'm sick.
What about the next person? the person who sits home every day wishing they could contribute, wishing that they can have more than the section 8 house they live in, the crappy car they drive around that's ready to break down.or maybe they don't even have that, for the fact they can't afford one.. These people don't have anything to live for except for what's right in front of them. Nothing to look forward to, nothing to be happy about. just to be grateful that this is what they get. That's not a very fun existence.
I'd like to change the rules and laws for the next person, though I'm not sure how..;(
Please believe me when I say, I'm not complaining about my self or the life I lead.I'm the blessed one!!!!
I just feel sorry for the person that can't get more out of life than what this government is giving them, which isn't much. Most people born with their disability aren't looking for a handout, they need it.. Some like myself would just like to do more to contribute and give back. If this is wrong condemn me...
Wait, they just did!!! Lol
I write this to let people know my situation, not to feel sorry for me, but to let people know what people born with their disabilities are now going through. To be born with a disability isn't easy but to be born with a disability and subjected to a life that does not offer advancement in anyway is not living..
It's existing... That's never any fun to just exist..
To all my friends I thank you so much and I love you all. Kell...
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