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Anthony DeCarvalho
174 followers -
Revenue Agent, Microfilm Scanner, Blogger, Husband, Father, Friend. Juggling responsibilities since 1974.
Revenue Agent, Microfilm Scanner, Blogger, Husband, Father, Friend. Juggling responsibilities since 1974.

174 followers
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This was me in November after completing an 8 mile walk, ending on a hill overlooking the new LDS Temple here in Fort Lauderdale.  
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Anthony DeCarvalho was tagged in Anthony DeCarvalho's album.
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Well, we're just wrapping up a two-day visit to NIH. The workers, nurses, and doctors have all shown great resiliency despite the uncertainty of the government shutdown. My heart goes out to all the workers who are furloughed due to politics in DC.

Well, the researchers now have a clearer picture of what Simon has. Once the work is published, I will get into more details. For now, I'll say that there are others out there with Simon's condition, but he was the youngest to be treated for it. The doctors have a clearer understanding of why their current treatment has been working. We know that Simon's mutation was spontaneous, meaning neither Gabrielle and I are carriers. Naomi is not a carrier, either.

Simon can have kids someday, and since he will know what to expect, the child can be treated right away.

There are experimental drugs being worked on that can inhibit the mutated gene, but, for now, Simon can continue his course of medications and wait for a bone marrow transplant donor match.

The fact that we now know what is causing his immune deficiency is a 

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I am a Federal employee who works for the IRS, and I am being furloughed today. I have to check in for 4 hours today to cancel any appointments and tie up any loose ends. I’m sure most Americans do not shed a tear for me being out of work.

That’s fine. This post is not about me. This post is about my son.

Simon has an appointment scheduled at the NIH, in Bethesda Maryland, on Monday, October 7th. From what I heard on the news, 70% of NIH staff have been furloughed during the government shut down. This has a direct impact on the care he is scheduled to receive. Simon has a rare immune deficiency, and the NIH is helping us learn more about the disease and how to treat it.

If I miss work and lose a paycheck, that is bad enough, given that my job is the main source of income for our family of 4, but shutting down 70% of the NIH is highly irresponsible.

I do not care about the partisan bickering. I blame both sides for looking to score political points. If every politician on both sides gave an inch of compromise, a deal would have been struck months ago, and we would have a budget today.

Instead, patients like Simon may have appointments cancelled for the care they need, simply because of the political game. Our leaders in Washington DC should be ashamed of themselves.

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Another exciting visit at Bascom Palmer for Simon. Nothing like Lego Batman 2 to pass the time ;-)
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Interesting hat.
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2013-08-23
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I wish these insurance companies would get their act together.

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Downtown Miami daytime
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Simon enjoying his new scooter.
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January 13, 2013 (3 photos)
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