The End! :)

I am late to respond to any of the articles that wrote about last weeks events. I might have gotten a response out to them but this past week got extreme busy came Wednesday afternoon. 

For one we had the most wonderful arrival of our precious friends Sammy and Celeste and then while they stayed with us we had a trip to the ER for Ron. We also had a trip planned to Denver for two nights to watch Sammy and Celeste's son Tyler Garcia play Ice Hockey. He is playing for the LA Selects this past year and it was a great chance for them to see their son play and of course for us to see Tyler play as well. The boys were thrilled to see the game on Saturday Night and the hugs they gave to Tyler after the game were priceless. The fun part was that on Thursday we watched some old home made videos of a visit of the Garcia Family in April 2006. Tyler was about 11 then and the boys were just about to turn 2!

Okay, I got off track but if I had the chance to respond to what happened last Wednesday here it would be:

To who it may concern,

I am sorry to be so late to respond to this article but I was very busy this past week due to my husband being sick and having out of town visitors. I am the Mom mentioned and Connor, my son, was the little boy asking Rick Santorum if he could help make Medication cheaper, meaning more affordable.

My son Connor, who has an identical twin brother Alexander, was diagnosed with Juvenile Myositis on January 11, 2010. JM is a very rare Autoimmune Disease and we believe the onset of his Disease was triggered (not caused) by an H1N1 Flu Shot my boys received in November 2009.

To try and be brief, we almost lost Connor to this Disease and only by the saving grace of an amazing Medical Team (Dr. Lauren Pachman and Dr. Megan Curran) from the Children's Memorial Hospital in Chicago is my son alive today! His muscles shut down at a very fast speed and within a few weeks he could not walk or move his body. At age 5 we had to carry him, feed him and try to hardly touch him as his muscles were horribly inflamed. It moved upwards as in him loosing the use of his legs first, to the use of his arms and finally his ability to lift his head as his neck muscles became weak. We knew it became life threatening when he started chocking on his food due to his throat muscles not working correctly.

We live in Colorado, but with some research we found that there was a Doctor in Chicago who had success treating children with JM. 

Now as in our background, my husband works for American Airlines and we always thought we had great Insurance through United Healthcare. So we flew to Chicago and Connor was admitted there for four weeks. There it was a touch and go and when he became somewhat stable he was able to be airlifted back to our home state of Colorado. Connor then spend another four weeks at The Children's Hospital in Aurora under the wonderful care of Dr. Jennifer Soep.

It took and still takes a tremendous amount of medications to keep Connor stable. He spend a year in a wheelchair and needed a tremendous amount of Therapy to relearn to walk, move and talk (remember every muscle was and is under attack). So he lost much of his ability to speak clearly, and hence the huge success for Connor who was not only able to stand up and look at Rick Santorum but also speak his question. From the beginning Connor was subject to daily Solumedrol Infusions (Steroids) for months, daily then weekly Chemo Infusions, then Injections and now luckily for him weekly oral Chemo Therapy, eight Methrotrexate Pills. He takes Daily Prednisone (Steroids) and Cyclosporin. This is another expensive and tricky drug due to the side effects it can cause to kidneys. Connor responded well to this medication but our worry is that he and his brother were both born with just one kidney each. Connor also made huge improvements when he stared getting monthly IVIG Infusions, starting in March 2010. Now, since we are taking about a rare disease there is no guide book in how to treat it and you will see many different opinions on this. We saw Connor trying to take a step for the first time, since he fell sick, after he received this Infusion. We credit this medication as in getting him back on his feet! Now one infusion of IVIG costs $18,000. Since it is not FDA approved for treating JM, an insurance company could deny to help pay for it. Luckily for us United Healthcare was wonderful from the very start and never failed to support us. However, many of Connor's friends are not that lucky and are suffering for the only reason that the medication they need is out of their reach due to financial reasons. When we added up the medical cost for Connors care for just the first year of his medical needs we arrived at the number of $1.3 Million. Now even if you have a great Insurance Carrier you might want to look at the small print and see that there is a Lifetime limit. For us it is $5 Million per person. Connor made wonderful progress but since there is no Cure you can guess why all of this has us worried. He might have coverage for another two to three years and then will be stuck with the label  of pre existing condition for the rest of his life.

As of today he is stable but to accomplish this he has to take 5 Medications in the am and 6 in the pm. He still has his weekly Chemo Therapy, continuously now for over two years.

Connor is very in tune with what is happening around him. He made many precious friends on the Oncology Floor at CMH and TCH, and at the Center for Cancer and Blood Disorders in Colorado Springs, however he has also seen many, to many, loose their battle. 

Both my boys are old souls at the age of 7, and both of them are used to talking to Adults (mostly those in the Medical Fields) and have been taught to show respect and look Adults in the eye when they are talking to them. Connor was so hoping to find support in a Candidate that has a daughter who is battling for her life but was in tears on our drive home after the meeting and told me he felt that Mr. Santorum did not care for other Children.

We were not asking for free handouts but for him to show that our children matter and that NO child should suffer or die in a country that has the Medications to keep them alive but instead keeps them out of reach for those families that cannot afford to pay for them.

How UN-compassionate can a person be to know children are dying at huge numbers (Pedriatic Cancer is the number one killer for our kids but gets the least research money, Adult Cancer Research and Aids get far more money). How can we as a country turn our back on children, the foundation of our future? New and hard lesson that my sons are learning! That the only people that will fight for their life's are theirs parents and they can only fight for as long as money is available? This is why I am so angry and frustrated. We are a very self-centered society that only looks out for our needs, middle age and up. Me, Me, Me at its best and here some complain that our youth does not have manners and does not care? Well, who do you think they are learning this from?

There is no cure for JM but with CureJm.org and the huge and selfless heart of the volunteers and Doctors we hope that someday there will be a break through and our kids will be saved. We get no Government Grants and all the Donations go straight into Research to Dr. Rider at NIH (National Institute of Health) and to the Research Dr. Pachman is doing in Chicago. Both my boys are on both Research Studies due to there genetic link of being identical twins.

So truly, what I want to see in a Presidential Candidate is someone that realizes we cannot neglect or ignore our foundation and future of this country. You have to make our children a priority and not have them die within the reach of the medicine they need. To tell them that you may die or be in pain and not get the treatment you need because you are poor? Really? Is that what we stand for? I just cannot accept this!

Thank You for listening to the Mom who did raise her voice to Rick Santorum, something I feel bad about as it is not in my nature to yell at someone. I was however frustrated that he did not understand the question from the other woman about the cost moreover did not show the respect to actually look my son in the eye when he ‘answered’ him.  Instead he had the nerve to compare a onetime investment for an iPad, which by the way is cheaper then $900, to parents scrambling to pay for life saving Medicine. I told him on Wednesday, February the 1st, 2012 in Woodland Park, CO, and I would tell him again, that I would gladly give my life in a heartbeat to save the life's of my children, going Bankrupt however makes me shake in fear that my son might not outlive me!!!

My husband and I are looking down a very dark tunnel with American Airlines in Bankruptcy and already announcing big changes to our Healthcare options and our Retirement.

I have been fairly quiet about all this for so long but my focus was of course on my Boys. Now however I feel the need to give a voice to our children. They have a lot to tell us and I think we all need to stop and listen.

Sincerely,

Anke Smith

Mom and Advocate to Connor & Alexander Smith, age 7

Lake George, CO 80827

Amen! :)