Dianna’s Beginning To The End

Hi, My name is Dianna Dilone. I'm a 27 year old, single mother of two girls, aged 1 and 4. No, that's not the reason I'm starting a Go Fund Me Campaign, as that is actually the easy part of my life! I was born with a kidney disease, called Alport Syndrome, and by the age of 19, I was already in need of a kidney transplant, as both of mine were failing. I was lucky enough to receive the transplant and life was great for seven years! Then, about a year ago, I started feeling the symptoms that I had felt seven years ago, and sure enough, my "new" kidney was now being rejected by my body. So, here I am, ready to go through another kidney transplant and I really need your help...


Alport Syndrome:
I won't bore you with the details of Alport Syndrome here beacause the most important thing to know in regards to it, is that it is hereditary (3 of my siblings also suffer from it), and it attacks your kidneys, almost always resulting in the need of a transplant. However, if you'd like to learn a little about it, here is a link to a page that will give you all of the information about the disease: https://ghr.nlm.nih.gov/condition/alport-syndrome 


About Me:
So, I've already given you a little bit about me in the first paragraph, but here is a little more. I am probably the happiest, most fun person you will ever meet who is hooked up to dialysis every day! I keep a positive attitude as best I can, because as I mentioned above, I have two young daughters, and they don't deserve anything less! I consider myself to be lucky. Sounds crazy as I sit here waiting for my second kidney transplant before the age of 30, right? Well, hear me out:
 I was lucky enough to have somebody willing to donate his healthy kidney to me seven years ago, but unfortunately, as I wrote above, it has now failed. BUT, my younger sister has now stepped up and after being tested, is a perfect match for me! We are hoping to get the transplant done sometime in June of this year. 

I could look at those scenarios in a couple of ways: It really sucks that I've had three kidneys fail on me in 27 years OR I've been lucky enough to have people in my life willing to donate, while so many other people wait for their name to be called from the National Database. I choose option 2, because to be honest, I don't have the energy to be negative (lack of energy is also a symptom of not having a functioning kidney)! 



My Daily Routine:
My daily routine is quite simple. Well, instead of starting in the morning, let's start at night. ‪Between 8 and 10 pm‬ I hook myself up to my dialysis machine. This machine functions as my kidney for the night. I have to stay hooked up for 12 hours, so I do it overnight. When I wake up in the morning, I have a huge bag filled with all of my "fluid". Since I don't have a functioning kidney, I don't do a lot of the things that most people reading this do (like urinate) so this machine makes sure my body gets flushed out and all that good stuff. Once I unhook myself, the rest of the day revolves around my daughters. My four year old has school and dance, while my one year old spends the day with me. After making dinner for the kids and me (although I don't eat too much as loss of appetite is another symptom, but hey at least I save money on food!), I usually get hooked back up the dialysis machine and start all over again. 



Why I Need Money:
I have tried to hold a job for years, but the unfortunate reality is that I end up in the hospital often. Since September, I have been to the hospital over 5 times. And each visit results in a one to two week stay. I actually spent all but one week of October in the hospital. Because of that, it becomes unfair to my employer to constantly have to find somebody to cover for me, so I have been out of work since October. I am in the process of trying to get State Aid, but if anyone reading this has ever been through that process, you know how frustrating and long it is! So currently, I receive child support from my daughters' father and when I have the energy, I babysit my sister's kids for some extra change, but between the hospital visits and lack of energy, that is also not always possible. I just want my daughters to live a full, happy life. Not having to worry about finding the means for them to eat, and keeping a roof over there head while I go through recovery would be a big relief ! I'd also like to be able to give my sister, Kiara, who has so selflessly decided to donate her kidney, which will cause her to be unable to work for months. She also has a young daughter. Any bit of help would be so greatly appreciated! Thank you so much for reading my story and if you have any other questions, feel free to message me! 


With love,

Dianna Dilone
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Dianna Dilone 
Mount Sinai, NY
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