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Fetal Alcohol Syndrome Advocacy

Letter to President Trump from Kimberly Shursen: Guest author

7/12/2017

1 Comment

 
I asked Kimberly if I could use her letter here because she is much nicer than I am when talking about the needs of people who use Medicaid.
 
​***
Dear Mr. President,
 
I’m going to start this letter by telling you the truth. I just turned nine-months-old yesterday, so Nana said she’d write this letter for me. I just don’t want to deceive you.
 
So, here’s the deal. My Uncle Anthony and Nana brought me home from NICU when I was three-weeks-old. When we got home some man brought a really big, tall can into our house because I wasn’t able to breathe on my own, so I had to have what is called oxygen all the time. The hose was like 60 feet long and had to go wherever I did. I was almost six-months-old when the nurses at the University of Iowa gave me a high five and said, “No more oxygen for you, baby boy.”
 
I have a really rare syndrome called Eagle’s Barrett. It effects like 1 in 40,000 kids and I just happen to be one of them. You see, Mr. President Trump, I don’t have any stomach muscles. And there’s a long list of stuff that goes with this syndrome referred to as prune belly because my stomach is shriveled up like a prune. Actually, you can see my liver protruding from my tummy and I have chronic kidney disease and a whole long list of other stuff. I’m really lucky ‘cuz a lot of kids with what I have don’t live and 20 percent succumb to the disease before the age of two. But Nana and Uncle Anthony say I’m blessed and everyone has challenges in life, so I’m not different, I’m special like everyone.
 
Anyway, my operation to get stomach muscles is going to cost a lot of money; like in the six figures money. And there’s no way my family can afford this type of drastic surgery.
 
My Mom and Dad are really sick so my Uncle Anthony is going to adopt me. And when you adopt a kid, the insurance they had with their parents follows them. So, I am on Medicaid and have a lot of doctors at the University of Iowa who depend on me to see them regularly so they can say I need this or that to stay healthy. I really don’t get all of it, but so far I’m doing really good.
 
I will not be able to sit on my own for long periods of time without the operation to build stomach muscles; I will not be able to crawl or walk and, my chronic kidney disease and a long list of other things can never be cured, so hopefully with a good food like green beans and stuff, I won’t have to have a kidney transplant. However, lots of kids have to go on what is called dialysis. I don’t know what that is, but it doesn’t sound good.
 
I am smart and am doing things that normal nine-month-old babies don’t do. I have eight teeth and wave hi and bye-bye and arch my eyebrows when someone talks like a baby to me. Please. I’m smarter than that.
 
I am funny and everyone stops me and says “he’s the cutest baby I’ve ever seen.” I’ve enclosed a picture. I’m not vain, but I do feel I was born for a purpose. Even when I was in Mommy’s tummy, I fought to stay alive and here I am ready to do my part in the world to make it a better place. Maybe one day when I’m all grown up, I’ll be a senator, or even President like you, and tell the world what you did for me so that I could have a healthy and successful life.
 
So, here’s what I’m asking, and I’m sorry to put you in this position, but I think you’re the only one who can make a difference in my life. I don’t want my insurance to change and, in return for helping me and other kids like me, when you grow older, maybe I could come visit you and tell you how much I appreciate and respect what you did for me by supporting Medicaid. My Uncle Anthony would make sure that I always know that you are the one who helped me achieve the things I knew I could achieve.
 
Thank you for wanting to be president and helping everyone not only like me, but poor people and sick people who need help to survive.
 
Nana says “We are our brother’s keeper” and that’s what I will grow up believing.
 
Sincerely,
Lukas Damrow
1 Comment
pengobatan sindrom nefrotik pada anak tanpa operasi link
9/19/2018 01:35:10 am

This article is very useful, thank you for sharing. And allow me to share articles too, it's about health and treatment. God willing

Reply



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    Delinda McCann is a social psychologist, author, avid organic gardener and amateur musician.

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