Fears from Other Families


Hear stories from parents about their fears:

  1.     Mary Kellet, Son Peter with Trisomy 18

  2.     Barb Farlow, Daughter Annie who died in Canadian hospital with Trisomy 13

  3.     Sam Sansalone, Daughter Kayta almost died in Canadian hospital with Trisomy 13

  4.     Stefan Antoni, Patient with Cystic Fibrosis

  5.     Carrie Holt, Son Toby with Spinda Bifida

  6.     Dr. Marty McCaffrey, Daughter Shay with Down Syndrome

  7.     Eileen Benthal, Daughter Johanna with Multiple Cavernous Angiomas

  8.     Gretchen Thibault, Son Ricky with Down Syndrome

  9.     Amy Glasscock, Daughter Allison with Down Syndrome

  10.     Erica Kelley, Son Samuel with Cystic Fibrosis

  11.     Erika Weise, Son Evan with Spinal Muscular Atrophy  

  12.     Darian Rafie, Daughter Celine with Multiple Complex Heart Defects

  13.     Jeanne Bolewitz, Son Josh with Down Syndrome

  14.     Leticia Velazquez, Daughter Christina with Down Syndrome

  15.     Mary Mabeus, Son Samuel who died of Trisomy 13

  16.     Cheri Whittenton, Son David who died of Trisomy 13

“My name is Stefan Antohi, and I am a 22 year old college student with Cystic Fibrosis. I agree with you wholeheartedly and am very frightened by the prospect of the quality of my care and the quality of care in general for all sufferers of CF and chronic illnesses declining under the Obama healthcare plan.”

-Stefan Antohi

“I am the mother of a 39 year old son who would not be alive today if he hadn't had top line health care. We have fought the insurance company for every dime they have paid and have spent many thousands of our own dollars to provide the necessary care. Obama's plan scares me to death. Turning to the government for our future health care is wrong headed and I want you to fight on. I didn't have the energy to fight PRIVATE insurance when we were about to loose our son so I did the care and my husband took on the insurance company. That wasn't half the nightmare fighting the government would be. It will ultimately cost more for less and the invasiveness will increase. You need to watch out for government regulation of pharmaceutical companies as well. We want them financially healthy. If they take a hit from the government we will all be hurt because R&D will get cut. If the meds hadn't improved we wouldn't still have our son. The White House is pushing their programs fast so we can't get in the way. Don't let them.”


“My daughter has CF and had a double lung transplant 4 years ago.  I firmly believe we would not have celebrated her 27th birthday in April had socialized medince been our only option.  I am for reform to provide access, but leave the private system options and quality alone!  For the price of the futile stimulus, 6 years worth of private insurance could have been purchased for 50 million citizens.  SO we all know this is NOT about providing access because that could be done for a fraction of the cost.”

-Carmen DeArdo

“Thank you so much for what you are doing!  I feel so strongly as well about this health care reform.  My son, Evan, is 6 years old today and has a rare form of Spinal Muscular Atrophy.  His medical care has been tremendous and I know that would change under this new policy!”

-Erika Weise

“I have two sons  with muscular dystrophy and I am convinced that they will ration care on my sons.  One son was diagnosed with a blood clot in the ER after a lengthy hospital stay this last April.  He  is now on a very expensive treatment to get rid of this thing -- I live in absolute fear of what this new health care will do with this treatment and other life extending health care that they will need.  We are currently getting the care we need, but that will end if the President gets his way with this dreadful plan.

Bless you for what you are doing.  I am calling and emailing away and am hopeful that we can stop this thing.”

“I am just so happy that there is another parent that sees the HUGE flaws in this plan.  I was thinking I was all alone out here and then I saw you on Fox.  I talk to every single person I see about this health care and I am finding a lot of people really don't want it and I am urging them to call Congress and voice their opposition along with me.  You know with the private insurance (yep, pay for it myself) and the tie-in to Medicaid we are doing ok.  I cannot sit back and let them ration care and make our children wait for doctor/hospital visits when seconds may mean life or death for them.”

-Susan Hawver