Georgia's Christmas Miracle
Donation protected
Guys... I am only posting this here because you are our community, our hometown, and we need some help.
If you have been following my daughter's story (Fierce Georgia On My Mind, A Trisomy 18 Story) you know that my almost two year old daughter has a rare chromosome disorder called Trisomy 18. My husband and I had no idea anything was wrong during my pregnancy, and when my daughter was a month old, we were told she had a 90 percent chance of passing by age one. Her heart was born with three heart defects, her brain had severe white matter, and her body had no muscle tone. We were told to expect her to be a vegetable who would never smile, laugh, or know her family.
She will be two in January and she is on the verge of walking and crawling. And boy, does she love her family, she laughs, she smiles, and she plays. She has no major medical issues right now. One of the holes in her heart has healed entirely on its own, and the other two are almost gone. The white matter in her brain disappeared. She is living breathing proof of God's grace and I am just lucky enough to bear witness to it.
After my daughter's birth, it became quickly evident to my husband and I that she would need to be my full-time job. We do not qualify for any government assistance because they do not include my stepsons as part of our household although we help provide for them. We just were denied Katie Beckett medicaid because they said my daughter isn't disabled enough (even though she cannot walk or talk and has developmental delays.) It seems like the more we try to do things the "right way" we are punished for it. It has been hard to find our way sometimes.
Bur this community has been by our side every step of the way. When we had no money for food, you fed us. When we couldn't afford diapers, you left them on our doorstep. You shared our GoFundMe when we couldn't pay the mortgage and you bought tshirts when we wanted to try a new feeding therapy. They say God will provide, and you guys have always been there to help.
So here is my newest plea. Georgia has been accepted to a 3 week intensive physical therapy program in Villa Rica. Programs like this are far and few between, and to have one even in the state, nevermind our backyard, is a Godsend. I truly felt God pulling us to be there... Georgia fell in love with the therapists during our interview and it is located next door to my husband's job. I thought for sure this was meant to be.
But our private insurance will not cover it. Katie Beckett would, if we had been approved. I am appealing their denial, but my understanding is that it can take a minimum of 6 months to change their minds. We do have a grant for $3500 to put towards the cost, but that is only half of what we need. I haven't made the commitment to the program because we don't exactly have an extra $10 lying around, nevermind an extra $3500.
Our current physical therapy place even offered to take Georgia more hours a week, but our private insurance refuses to cover that as well. She only is covered for 30 visits a year, and that isn't even enough to go once a week.
To say I am frustrated is an understatement. All I want for Christmas is to see my daughter walk. And maybe that sounds dumb... I don't know. But waiting on the government to come around and see that she needs this help is killing me as a mother. If it was your child, wouldn't you fight to give them every opportunity? Wouldn't you do whatever you could to help them succeed and be happy?
I guess I am hoping someone out there can help. We need to fundraise $3500 by February 6th if we decide to do the intensive program, and I just don't know how to make that happen.
I considered a concert, a walk, or a run, but I do not even know where to start.
Anyways, if you got to the end of this long post, thank you. Please pray we can find a way to get our daughter the therapy she needs.
If you have been following my daughter's story (Fierce Georgia On My Mind, A Trisomy 18 Story) you know that my almost two year old daughter has a rare chromosome disorder called Trisomy 18. My husband and I had no idea anything was wrong during my pregnancy, and when my daughter was a month old, we were told she had a 90 percent chance of passing by age one. Her heart was born with three heart defects, her brain had severe white matter, and her body had no muscle tone. We were told to expect her to be a vegetable who would never smile, laugh, or know her family.
She will be two in January and she is on the verge of walking and crawling. And boy, does she love her family, she laughs, she smiles, and she plays. She has no major medical issues right now. One of the holes in her heart has healed entirely on its own, and the other two are almost gone. The white matter in her brain disappeared. She is living breathing proof of God's grace and I am just lucky enough to bear witness to it.
After my daughter's birth, it became quickly evident to my husband and I that she would need to be my full-time job. We do not qualify for any government assistance because they do not include my stepsons as part of our household although we help provide for them. We just were denied Katie Beckett medicaid because they said my daughter isn't disabled enough (even though she cannot walk or talk and has developmental delays.) It seems like the more we try to do things the "right way" we are punished for it. It has been hard to find our way sometimes.
Bur this community has been by our side every step of the way. When we had no money for food, you fed us. When we couldn't afford diapers, you left them on our doorstep. You shared our GoFundMe when we couldn't pay the mortgage and you bought tshirts when we wanted to try a new feeding therapy. They say God will provide, and you guys have always been there to help.
So here is my newest plea. Georgia has been accepted to a 3 week intensive physical therapy program in Villa Rica. Programs like this are far and few between, and to have one even in the state, nevermind our backyard, is a Godsend. I truly felt God pulling us to be there... Georgia fell in love with the therapists during our interview and it is located next door to my husband's job. I thought for sure this was meant to be.
But our private insurance will not cover it. Katie Beckett would, if we had been approved. I am appealing their denial, but my understanding is that it can take a minimum of 6 months to change their minds. We do have a grant for $3500 to put towards the cost, but that is only half of what we need. I haven't made the commitment to the program because we don't exactly have an extra $10 lying around, nevermind an extra $3500.
Our current physical therapy place even offered to take Georgia more hours a week, but our private insurance refuses to cover that as well. She only is covered for 30 visits a year, and that isn't even enough to go once a week.
To say I am frustrated is an understatement. All I want for Christmas is to see my daughter walk. And maybe that sounds dumb... I don't know. But waiting on the government to come around and see that she needs this help is killing me as a mother. If it was your child, wouldn't you fight to give them every opportunity? Wouldn't you do whatever you could to help them succeed and be happy?
I guess I am hoping someone out there can help. We need to fundraise $3500 by February 6th if we decide to do the intensive program, and I just don't know how to make that happen.
I considered a concert, a walk, or a run, but I do not even know where to start.
Anyways, if you got to the end of this long post, thank you. Please pray we can find a way to get our daughter the therapy she needs.
Organizer
Kimberly Schreiber Minor
Organizer
Newnan, GA
