Senate doesn't stand up for worldwide disability rights

This week - Tuesday, December 4th - the Senate had a chance to ratify the United Nations treaty on the rights of the disabled.  It is modeled after the Americans with Disabilities act, was drafter under President George W. Bush and is a great step forward for people with disabilities around the world.  It should have been a no-brainer for the Senate to ratify it.  But it wasn't.

Former Senate Majority Leader Bob Dole made a rare appearance on the Senate floor in his wheelchair to try and sway the Republicans to vote Yea on ratifying this treaty.  They did not.  In all, 38 Senators voted NAY and refused to stand up for disabilities rights around the world.  All 38 Senators were Republican with Senator Mike Lee (R-UT) leading the charge and supported by former senator Rick Santorum (who, sadly, hails from my state of PA).  And I can only think to myself that the Republican party is supposed to stand for Christian values yet decided to do nothing for the disabled.  I am happy that in all 8 Republicans - including Senator McCain - did vote Yea to the treaty but that just wasn't enough.

For more information, here is an article from the Washington Post and here is an article on politicususa.

Senator Toomey from PA voted Nay.  I called his office and told him I was not happy with his vote.  Senator Casey from PA vote Yea.  I called his office and thanked him for his support on this treaty.   I encourage others to do the same.  Their phone numbers are:

Senator Pat Toomey:  202-224-4254

Senator Robery Casey:  202-224-6324

Want to know how your Senators voted?  Click this link to see.

And for a bit of perspective, Jon Stewart did a great bit on this issue called Please Tell Me This is Rock Bottom.  As he puts it - "Republicans hate the United Nations more than they like helping people in wheelchairs."

The Daily Show with Jon Stewart	Mon - Thurs 11p / 10c
Please Tell Me This is Rock Bottom
www.thedailyshow.com
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That about sums it up.  I hope this isn't what we will see for the next 4 years because, after all, we live with a government for the people by the people.  Your representatives vote for YOU.  Make sure you call them and let them know how they are doing with that job.  It only takes a minute.

Dear Mrs. Obama

A year ago the head of the Brendan B McGinnis cCMV foundation asked parents to write letters to Mrs. Obama to raise awareness of CMV. The letters were compiled but not delivered until today.  Today the letters from ~100 families were hand delivered to President Obama by Tracy McGinnis where she met the President and gave him an overview of CMV with her sons - including Brendan who is severely affected by cCMV.  President Obama said he will read each letter and I'm so proud my letter and a photo of Emma was included in the information Tracy gave our President.  

In case you are wondering what I said, here is my letter with a couple of items edited out for the web because some information is still best left off a public blog ;-)

Dear Mrs. Obama,

Today I am writing to tell you about how a seemingly insignificant virus has changed my life.  Cytomegalovirus, or CMV, is a very common virus and many times the symptoms are similar to the common cold.  However, when a woman who is pregnant gets effected by CMV it can cause a variety of problems with the unborn child.  I had never heard of CMV, was not counseled on it during my prenatal visits (where I was advised about toxoplasmosis and other obscure viruses), and did not even know I had contracted CMV until my baby was 3 months old. 

Emma had an uneventful birth.  She was a planned pregnancy and I attended all my prenatal visits.  I did not drink, smoke or do anything that could harm my baby.  I had gone to college, worked several years, completed a graduate school program, met and married the man of my dreams, had my first child and was very excited about my second baby.  I was so excited to find out she would be a girl - I would have two girls - sisters!  I love the bond that sisters have and was so happy to finally meet my little baby Emma.  So when we found out she was deaf when she was 6 weeks old we thought it must be due to genetics.  Upon going through the process of determining the cause of her hearing loss we found out the cause was from CMV.  We found it out on Dec. 31, 2007 and promptly went home and googled CMV and baby and I can tell you it was a horrible way to ring in the new year.  There were no positive messages about the impacts of CMV on babies and many references to death and severe disabilities.  I sobbed for hours and kept looking at my baby who I thought was perfect in every way and thought it must all be a big mistake, that the virus CMV was not the cause of her hearing loss.

Fast forward to today.  Emma is now 4 years old.  She has a loving supportive family.  She also is deaf and has cerebral palsy that effects every part of her body.  She cannot sit independently, hold her head up for prolonged periods of time, crawl, walk, talk, feed herself, give herself her own bottle.  She can smile, giggle heartily, and melt your heart.  She is a smart little girl who knows her colors, animals and many other things.  We are working hard to give her a communication system so that she can tell us more of what she knows! 

I don't know what the future holds, but I sure do know that she is one loved little girl.  Her father, her sister and I include her in all our activities.  But, her direct care needs are high.  I no longer work and it is very hard financially.  I worry constantly about all the political discussions about health care and cutting back on Medicaid funding.  We pay about $X/month for health insurance and it does not cover therapy for chronic conditions (cerebral palsy is, not surprisingly, considered a chronic condition) and it excludes all hearing coverage including cochlear implants.  Emma has bilateral implants that she uses to hear and they require maintenance and auditory therapy.  Emma is making a lot of progress with physical movement, but it is a constant battle with insurance to obtain the equipment she needs to lead a better quality of life.  While I love my daughter with all my heart, I would love to prevent other families from having to see the effects of CMV on their child and from the sleepless nights worrying about their well being and how to pay for their care.

I imagine that when you were going through prenatal visits you had not heard of CMV and it is by the grace of God that you did not find out about it when your baby was 3 months old and not meeting her milestones.  I know we can do a better job of educating women about CMV and how they can prevent the leading cause of non-genetic hearing loss and cerebral palsy.  More children are affected by CMV than spina bifida, fetal alcohol syndrome, or downs syndrome but yet people are still relatively unaware of the effect CMV can cause on their unborn baby.

Please help us spread awareness of CMV.  Please continue to fight to keep Medicaid available for our disabled children. 

Thank you for your time and consideration.  I'm attaching a photo of Emma for you.  She is my hero.  If you are ever in the Philadelphia area I would love for you to meet her.  I know she will forever touch your heart.  You can reach me at:   My email is

Best Regards,

Kristina , Mom to two beautiful girls, one severely impacted by CMV

Proud Supporter of Obama 2012

It's no secret that I'm an active Obama 2012 supporter.  I voted for him in 2008 and think he had a hard road and overall took our country in the right direction.  I specifically am pleased with some of the reforms he made - such as the financial reforms, the changes in health care (ok...it's not perfect but a good starting point!), and his fight for equal pay for women.  There are some things I'm not so pleased with, too, but I think that would be the case regardless of our president since I can't be pleased all the time.  Just ask my husband ;-)  Just Joking!

Unfortunately we didn't get to see approved legislation on equal pay for women but I am still hopeful it will come.  I am worried, too, about what a Republican president would mean for women's rights here in the USA.  Case in point Todd Akin and Paul Ryan's stance on rape and conception.  How can this play out in real life?  Here is an eye-opening well written article on CNN from a survior's point of view.    

Now, for some fun with the political process I leave you with this video.  Mom and Dad - you'll get a real kick out of it so be sure to watch!

CMV Legislation

There is some FANTASTIC news on the CMV awareness front.  The grassroots effort to raise awareness of CMV for everyone - and especially women of childbearing age - was in the national spotlight!

On June 23, 2011 the United States Senate unanimously passed Senate Resolution #215.  To say that a lot of hard work went into this is an understatement and I'd love to thank the ladies of StopCMV.org and everyone else who made this happen.  I'd also like to thank Sen. Barbara Mikulski [D-MD] for sponsoring and Lisa Murkowski [R-AK] for co-sponsoring this resolution all our members of our 112th Congress who took the time to understand the effects of CMV, ask questions, read the citations and pass the resolution.

Senate Resolution #215 calls attention to CMV in a more public way and specifically calls out two actions:

1.)  Designates the month of June as National Cytomegalovirus (CMV) Awareness Month in order to raise awareness to the dangers of CMV and reduce the occurrence of congenital CMV infection; and

2.)  Recommends that more effort be taken to counsel women of childbearing age of the effect this virus can have on their children.

The hope of so many families effected by CMV is that we can raise awareness on CMV so that others can prevent CMV from changing their lives.  Having S. Res. 215 takes us one step closer to that reality!