The bottom line is that Riece is recovering from a very contagious disease that continues to infect her because the home is not sterile. This money will help Donna afford the household items and medical equipment that she needs to replace in order to make their home liveable and for Riece to get better once and for all.
I've known Donna since 2000, the entire time that Riece has been alive, and she has literally never once asked for help (except in moving a pool table, but that’s a whole other story). Donna is the one that has raised thousands of dollars for other charities – participating in a number of team in training events to raise money for the Leukemia and Lymphoma Society – and donating her time doing things like wrapping presents at Christmas for orphaned kids. She has the biggest heart and is the most amazing mother. You never could understand a mother’s love until you know Donna and how she has devoted her entire life to taking care of her daughter. She’s dealt with things that no one should ever have to deal with, and never asked for anything in return. If anyone is deserving of a little charity of their own, it’s Donna.
Here is Donna's story, in her own words:
In the past 19 years, my terminally ill daughter, Riece Sloan Robinson, has had 33 surgeries and her life has been in jeopardy more than once.
When Karen insisted I start this, I had typed up a detailed explanation of why I needed help. I've come to realize that I probably gave too much information and a number of questions had arose. So, I've removed the whole long story of the 1.5 years that has gotten me here and instead I have given a short, quick summary. I will also address those common questions that came up.
In case you have any othe questions or care to know what we've been going thru in detail, I will happily send you a private email...If you would like this personal email from me; please just ask.
I promise it will be both heartbreaking and comical.....oh, and some profanity, too.
Summary: Riece contracted C-Diff in May after a major surgery. C-Diff is a highly contagious disease and the invisable spores live for 3 to 5 months on surfaces and remain in her invironment even with CDC approved cleaning products and biohazard protocols in place. Every attempt to rid her of it has failed and now she will need a F.M.T. (fecal matter transplant). Because she has a compromised immune system, the day of the transplant, she will have to be moved to a completely clean environment with sterile equipment that has not been infected with spores. So, we have to figure out a way to do this and provide her with a safe place to live.
1. Don't you have medical insurance?
Yes, Riece has medical insurance. Actually, the best you can get in California. She has a primary and a secondary and I have extensive knowledge on how to use it to the best and most it offers.
2. Why haven't you asked your insurance to cover your needs?
Yes, I have. I have accessed her insurace and this fundraiser is to cover the out-of-pocket expenses that I need help with and the cost of the FMT which is not covered. I have exhausted her insurance pool.
3. Can she ever be cured of her Terminal Deletion of the 6Q25.1?
No, she can never actually be cured. She will always need 24 hour nursing care (which is not covered by insurance- and thus I don't sleep).
4. Do you get any Gov't help?
Riece is Canadian, as am I. We do not get any government assistance. No S.S.I. nor disability or any other programs. She does get some skilled nursing covered, but it is not staffed due to a shortage of nurses in the state. Plus, no nurses want to work with highly contagious C-Diff. A few have quit or won't even come in the house.
5. Why would I ever choose to have a baby like this? You have no quality of life........Yes, this was a question....
So, I present to you this:
Have you ever loved someone more than yourself? Like truly? Could you do it? Could you put someone else's needs before you always? Not like for a while or a couple years, but forever. To completely care for someone to ensure they are the happiest and healthiest they can be? I don't know how much Riece understands, but I can tell you that she knows the purest and truest love.... and she rewards me with her love and smile and that is priceless. Ahhh, the way she looks at me and laughs with pure joy *sigh*
Riece was born with a Terminal Deletion of the 6Q 25.1 chromosome which is extremely rare. SHE IS THE ONLY DOCUMENTED CASE ON THE WHOLE PLANET. The doctors couldn't find any info for this diagnosis and they gave her an almost non-existent life expectancy. To say it’s been a challenge is an understatement. Riece suffers from a number of medical conditions, from Spina Bifida to seizure disorders and Scoliosis and more recently, her medical issues have given way to a whole other set of challenges.
Any help you can give is incredibly appreciated.
With love and gratitude,
Karen (and Donna + Riece)
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