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Oh yea, I think we could ALL easily be in your situation quickly. You have our support, love and prayers. I just wish there was MORE that we could do as your sisters/family in the T21 world. We love you and Parker and just know that!
Everything you have said is 100 percent true, especially this:
Our family is a member of a fast growing group of middle class families who are falling through the holes of the health care system. And it isn’t just families who have medically fragile kids that find themselves in the same boat we are in. Any medically fragile member of a family can throw that family into a financial tailspin with medical bills
Emma is a 4 million dollar child. She is 5 years old.
We do not qualify for SSI Medicaid WIC CMS or any other “aid”-
I understand Tammy, I really honestly do.
-H
I’ve seen this happen to people. It is so discouraging that a system that help your family actually doesn’t. I can’t begin to imagine how frustrated you are.
The closest my family ever came to this was when my mother-in-law was seven years into cancer and there were no more chemotherapy treatments that would work. I didn’t know that once one chemo has been used the body becomes immune to it and it can’t be used again. She went through countless treatments until there were no more combinations of drugs they could do. So her oncologist told us her last hope was an experimental treatment that would cost $5,000 a month and no insurance would touch it. It was simply not something our entire family working together could do.
It shouldn’t be this way. Having a sick family member should not bankrupt a family in this country. I’ll never understand how they can turn Parker down. It’s shameful.
And I do understand that you will do whatever you have to do to just keep him. Of course you will. I’m just sorry it has to be so hard for you. You’re in my prayers.
Tammy, all I can think as I read this post is that I would do WHATEVER it took to get the medical needs of my child met in an effort to keep my child alive. Pride would be quickly out the window.
It is so frustrating to me that having a sick child/family member easily has the potential to bankrupt a family, any family. That’s just not right.
I, too, am sorry this has to be so hard for you and your family. You continue to remain in my prayers!
Isnt it a shame that our states make it so hard for the people who really need the help. I understand they are trying to protect them selves from fraud and all, but when you have a sick child, who needs their services, they need to rexamine some of their guidelines. I will keep Parker and your family in my prayers.
By the way….he is just so cute.
Hi Tammy. I know exactly what you are going through. We have gone through the same thing with our little guy, Rhett he is 13 months old and has T21. He isn’t near as sick as little Parker, but we went through open heart surgery in Feb, and he spent the first month of his life in the NICU at Utah Valley. I was working full time as was my husband, and we didn’t qualify for any assistance. I have since had to quit my job, as I need to be home with him and I had a jerk of a boss who told me that he wasn’t going to cateer to me and my “stupid retarded kid” We are trying not to loose our house, and although since I quit we do qualify for SSI and medicade, We lost over twenty four hundred a month in income. We are still struggling, knowing I can’t go back to work, becase I will not leave my child with a stranger. Espicallly when he is still on oxygen. I wish there was something more I could do. We will keep you in our prayers and when we come across someone who wants to donate some money to someone we will send them your way.
I contacted Oprah about you. (I have never done anything like that before.` I emailed them saying she should do a show about middle class families like yours stuck between a rock and a hard place. She probably gets thousands of letters a day, but I figured it couldn’t hurt, right?
Man, Tammy, I wish all these people with stupid questions and smug comments (that you referred to in your post) would leave you alone.
Hey Wiz, I think that’s cool, what you did.
We are so fortunate to live in Connecticut. They have wonderful programs here to help us out. I just wish every state had resources out there for families in need. There should be a nationwide program to help children get the healthcare they need and deserve. You guys are always in our thoughts and prayers!
Our dspd worker and service broker told me about the spend down program. With the spend down program you can use any bills that you have to pay on or that you paid on in the last three month to go to your spend down and then the medicaid retroacts back. We do that when we have to have surgery or a CT scan. It helps a ton. Once we do that we get WIC cause we have medicaid and that helps. Get on the waiting list for DSPD and bug the heck out of your social worker or list worker. I am sorry you are struggling. I hoped that we would see you on Utahkids more. Good luck
Nancy Brown and Tyler
Thanks for the update and explaining a few of the questions you’ve been asked and why you don’t qualify. It still doesn’t make sense to me (the health system!) I’m keeping your family in my prayers!
You have been TAGGED with the “6 Weird Things About Me MeMe”. Stop by my blog for How to Play with a MeMe. Enjoy!
That’s exactly why I feel so bad for your family, Tammy. You haven’t done anything to deserve this hardship in any way and it just shouldn’t be this way. It just doesn’t make sense.