My daughter Tatum was born 2-10-06 with congenital heart disease. After this was discovered the hospital did genitetic testing and it was discovered that she has something called Williams Syndrome. She was DX by a positive fish test at 6 weeks.
Williams is a rare genetic condition (estimated to occur in 1/7,500 births), which causes medical and developmental problems. It was first recognized as a distinct entity in 1961. It is present at birth, and affects males and females equally.
As a new young mother this has been very hard. I have found support from other mom’s in the same situation that I have meet online. We all have blogs that make it easy for us to stay on top of each other daily lives and trials with our children. This is the link to my Blog… www.emmaandtatum.blogspot.com
The insurance companies have been an entire different racquet. I am only trying to get the best for my baby. I was recently denied a request to take my baby to the WS clinic at CHOP (children’s Philly). This was a request sent to Care First by my daughter’s pediatrician. I feel that insurance is a scam. We pay 800 a month for family coverage and until Tatum was born no one was ever really sick. When we need them now they are not here for us. How can Care First possible call themselves one of the best in the country? I feel that this has to stop at some point. Being a middle class family there is nothing I can do for my baby without insurance, we cannot afford these appointments out of pocket and my family income is to high for Tatum to qualify for medicade or social security.
What is it going to take for this nonsense to stop, is it ever going to be a equal playing field for all sick children? I am not sure if there is anything you all can do to help but figured it was worth a try.
I think awareness of this syndrome and our countries poor over priced heath care is a huge issue especially with the elections around the corner
When it is time for Tatum to have her heart surgery is the claim to have this done by the best going to be denied because it is "out of network" I bet it would be a non issue for the suits children that are making these poor decisions. So is what is good for the goose really good for the gander?
So maybe I am a bit nuts but this is what I sent to the Oprah producers…LOL
4 comments:
You rock, Lis! I'll drive to Chicago with you to bring the kids to see her... who knows, no one has done it so this might be what she'd like to see!
Love you- K
Good for you to have the courage to speak up! I can only imagine the challenges you face. I also struggle with the insurance issues - my boys currently don't have any because we don't qualify for any assistance and I can't afford to pay for it.
God bless.
edith
http://photogal938.blogspot.com
I put my letter to the President on my site. Who know maybe it will help all of us. I'd go to Chicago to, but I have to lose about 30lbs first. LOL.
I am still waiting for my call from Oprah. Has she called you yet?!?
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