So, imagine giving birth to a beautiful baby boy. Joy abounds as he is added to your family. Grandma and Grandpa are euphorically called with the news right after he enters the world. Big sister comes to meet him. This is a pinnacle experience!
The day after his birth, you find your family taking a precipitous plunge from that height as the doctor enters your hospital room with heartbreaking news, "Well, there's no easy way to say it. He has hemophilia."
Over the next 15 years in his battle with this chronic bleeding disorder, he will have over 2,000 IV needles inserted, administering the life-saving clotting factor that his body will not produce. The cost of his treatment runs in the neighborhood of $200,000 per year if all is going well. If it is a bad year, it will cost more because there will be hospitalizations, procedures, extra infusions, and maybe even a wheelchair thrown in for a time.
Then, in one short Sunday episode of a TV series, "Secrets and Lies," there is this...
|Listen to the video excerpt for yourself here: http://youtu.be/710hBFKeNFk|
Words failed me at a time like this. The child you were imagining is MY child. And the insult leveled with such abhorrent misinformation for the sake of a TV plot line not only demeans this magnificent young man I am raising, but also many, many other awesome men, boys, babies and their fabulous families around the country.
Thankfully, national organizations advocating for our families wasted no time in condemning ABC and the show's writers for spreading such harmful, insulting ignorance during - of all things - Hemophilia Awareness Month. Both the National Hemophilia Foundation and the Hemophilia Federation of America issued scathing press releases, asking for a public apology. Bleed Free, Inc, a patient-driven advocacy group established a petition for people to sign, requesting that ABC make a public apology to both the hemophilia community and the viewers of "Secrets and Lies."
Patients engaged, one putting together a list of all of the show's sponsors for complaints to be lodged.
|Patient assembled list of sponsors|
And despite all this, the community still awaits a response. Perhaps you would be willing to join us in contacting ABC/Disney's president, Ben Sherwood about this insulting ignorance.
Meanwhile, Ben Sherwood and Barbie Kligman, the show's executive producer (@Barbielk on Twitter) really ought to spend some time educating themselves on the basic facts of hemophilia. It's too bad they never cared enough to do that before they inflicted so much harm on people with this disorder and their families, to the point that there are now kids afraid to go to school because of their LIES.
Since it IS still Hemophilia Awareness Month, YOU should also learn the facts! Hemophilia Federation of America has a great page consolidating facts and images. CLICK HERE to learn more!
Not to be outdone by Hollywood's rude ignorance, a cruel, rude neighbor more overtly insulted a young lady in Miamisburg, OH. After losing her leg in an accident, Ashley Brady fought to get a handicapped parking space in front of her apartment. Unfortunately, once she was finally granted the spot, someone without a hang tag or disabled plates repeatedly parked in the space. Given the fact that she had fallen in the past, Brady left an assertive note asking the person taking the space to please stop parking there.
|Photo image courtesy of trendobjects via 123rf.com|
"Hey handicap! First, never place your hands on my car again! Second, honey you ain't the only one with 'struggles.' You want pity go to a one leg support group! You messed with the wrong one! I don't care what your note said shove it, but you touch my car again I will file a report, I am not playing! I let the office know the cry baby one leg touches my property I will cause trouble so go cry your struggles to someone who cares cause I'm walking away with both mine! -[expletive]."*