For the last ten years, my friends Keegan and Tanya have been fighting tirelessly to raise funds for and awareness about Prader-Willi Syndrome. One of the many issues that goes along with this disorder is never-ending hunger.
Throughout this ordeal we learned of a whole new type of sorrow (who knew there were so many different types of pain?), but also a whole new type of appreciation and love for one another, and for the child my wife is busily building.
The treatment may be approved this year, but many people won't be able to afford the $100,000 cost. Still, we're excited this gene therapy works and this approach could benefit other genetic vision disorders.
My wife and I were not patients at Planned Parenthood while we sought to build our family. But it is the kind of services that Planned Parenthood provides -- and legislation that Planned Parenthood helps lobby for -- that allowed us to have our child safely and healthy.
While ALS has certainly gotten so much more focus than it would have otherwise, now that all the ice buckets from all the ice-bucket challenges have been emptied, those on the front line are still suffering, with too little funding and often with little company.
For all of Abby's 9 years, I admit that I have been a very protective parent. Even before we knew she had special needs, let alone a terminal illness, I found myself trying to protect her from actual and perceived dangers.
Although intellectually and conversationally the doors have been unlocked, there are still so many things I struggle with. Even typing this speech has taken days to get this far and will take several days more to complete, typing literally one letter at a time with my right pointer finger.
I personally would not select out or abort a fetus because it tested positive for Lynch Syndrome. I find it ironic that a living person has to wait until the age of 18 to have genetic testing, but an unborn child's parents can determine whether or not the child has Lynch Syndrome before birth.
Parents of special needs children have enough on their plates just tending to the needs of their kids. So it's not surprising that many of these parents haven't had time to hatch a long-term financial plan in case their kids need care after they're not around.