“That’s why this is so important, this is why I ask Harry Reid, Senate Democrats, and the President himself to stop this nonsense, let us help people, let us help children, please,” Rokita pleaded.
The House-approved funding for NIH through fiscal year 2014 passed with the help of 25 Democrats who defied their party leadership to make sure that NIH’s ongoing clinical trials are not interrupted by the federal government shutdown. (See Roll Call 514).
Rokita’s young son, Teddy, was diagnosed with Angelman Syndrome, a rare neurogenetic disorder that afflicts about 1,500 Americans and occurs in one of 15,000 live births. Discovered by Dr. Harry Angelman in 1965, symptoms include hyperactivity, small head size, sleep disorders, and severe movement and balance problems.
According to the Angelman Syndrome Foundation, the disorder is often misdiagnosed as autism, cerebral palsy and Prader-Willi syndrome. There is currently no known treatment. (See Angelman Syndrome.pdf)
Speaking with medical leaders and fellow House Republicans at a press conference on Capitol Hill Thursday, Rokita said:
“I believe that families, faith communities, associations and neighbors can take care of us better than government programs can, but government should be there to help. I believe that science is a gift, and that we should use our talents whenever possible to improve the condition of man. I believe in free enterprise and the private sector as the best and most efficient way to raise our standard of living.
“But I also believe there are times that the private sector cannot reasonably be expected to do the research and development needed because the issue, the syndrome, the disease might be so rare that it is economically prohibitive from a return of investment perspective.
“I know this story personally, as my son Teddy suffers from an extremely rare neuro-genetic disorder called Angelman Syndrome. Teddy walks real funny. He’s never had a conversation with [his mother] Kathy or myself and probably never will, probably will never speak.”
Rokita added that his son is only expected to reach the developmental age of 18 months, but that he and his wife hope to advance that to five years.
Rep. Renee Elmers (R-NC), who also spoke at the press conference, said, “If you are a family going to the NIH for care, it’s because you are in a critical, critical situation. That you are looking for that last bit of hope, and you are looking for that treatment that will save your child’s life.”
Rokita said his son “is expected to have a full life, a long life, and that is good, because another condition of Angelman Syndrome is that you’re unnaturally happy nearly all the time, and what a gift for all of us that is.”
But, he added, “without programs like the NIH to go in and research cures, therapies, or syndromes like Angelman, Teddy…and all the other kids affected with Angelman Syndrome may not have the hope that [Congresswoman] Renee Elmers talks about.”