Please Remember ^Sirita^ - A Precious Angel who Spent her Life in Foster Care before being Murdered by Step-Mother

"What Sirita wanted, more than anything else, was a place to call home. She wanted to know, what is my place in this world? Where do I belong? She wanted a place where she could stay forever and ever. Her place was not in this world, but she is finally home, home now with Jesus, where she is loved forever and ever and ever."



Five years ago an angel gained her wings and flew to Heaven, away from the pain and fear, and into the arms of the Lord. Please remember Sirita Sotelo, aka the fairy-princess Boo-Boo



The following is an excerpt of Sirita's Eulogy, written by her foster daddy, Gary.

I was Sirita’s foster daddy. We were new foster parents. We had done short respite care for a couple children for a week or a weekend, but Sirita was our first long term foster child. We don’t have children of our own, so we were also new parents. In many ways, Sirita was like our first born.

Sirita came to us, like any child, as a gift from God. She was frightened and shy, as any child would be brought into the home of complete strangers. She missed her mom. She loved her mom. With love and patience, we tried to do everything we could to make her feel welcome and secure. We introduced ourselves as Gary and Magda, and she did call me Gary, but she insisted on calling Magda, “Mommy.” Children need that, don’t they? She understood she had many mommies. We told her she was lucky to have so many people that loved her.

Every morning, when we got her from bed, we said, “Good Morning, Sunshine!”

Sirita was a fashion princess. She loved trying on clothes, have her hair done up with hair pretties, and then look in the mirror. She had her favorite clothes, and some very interesting, shall we say, combinations. Sometimes when I was the one getting her ready I would hand her a shirt or something and she would dead-pan back to me, “that doesn’t go with anything.” I would think, was that my wife’s voice I just heard?

I called her “Boo-Boo.” She liked that. She would call me “Boo-Boo,” and I would say “no, you’re Boo-Boo.” And she would say “no, you’re Boo-Boo!” I would say “no, you are Boo-Boo, Mommy is Moo-Moo, and I am Ugu-Moo-Goo. I get the coolest name because I’m the one making them up.” And she would say “no, you’re Boo-Boo!” She only had the one argument, but she was sticking to it.

I didn’t want her to be afraid of the dark, so I took her outside at night to look at the moon and the stars. She would say, “Hello moon!” She knew she could always delay bedtime another 5 minutes by asking to see Mars; she could point it out in the southern sky. I was so proud, because I had taught her that.

Sometimes she had nightmares. When I heard her cry, I would go hold her for a while. Sometimes after a bad dream she would just come into our room, climb over top of me, and snuggle in between us.

She loved to dance and she loved to watch figure skating. She loved to sing and learned many songs. She could often pick them up after only hearing them once. We had many songs we sang at bedtime. She knew all three verses of “Jesus Loves Me.” Many of you probably don’t know the third verse. It goes, “I love Jesus, does He know? Have I ever told Him so? If I love Him when I die, He will take me home on high.” I had no idea when I taught her that verse that I was actually preparing her for something.

She could sing songs normally beyond the range of children, such as “Jesus, Jesus, Jesus, There’s just something about that name.” That song has many half steps that children’s songs generally don’t have. She did really well. When we got to the part that goes “Master, Savior, Jesus,” she would sing, “Master, Savior, Boo-Boo” and burst out laughing. I told her “no, I call you Boo-Boo, and you can call me Boo-Boo, but we don’t call Jesus Boo-Boo.” But I couldn’t stop her. And honestly, I don’t think Jesus minded, because what she understood when I called her “Boo-Boo” was that I was really saying “I love you.”

Click here to learn more about Sirita and Sirita's Law

Click here to visit the Foster Care Justice Alliance

Click here to go to Sirita's memorial myspace

We will never forget you, princess!

Pediatric Rheumatologist Supple and Demand Information

I've mentioned before that there is an extreme lack of pediatric rheumatologists. Here is more information.

Part One: HSRA Survey

In my constant researching via the internet, I came across a study by the U.S. Health and Human Services' Health Resources and Service Administration. Here I will quote some key points of interest from the study. You can read the full summary here, or the full version here (warning- PDF file)

• Fewer than 200 certified pediatric rheumatologists currently practice in the United States, making it one of the smallest pediatric subspecialties.
• Thirteen States, including heavily populated States such as Arizona, South Carolina, and Alabama, lack a pediatric rheumatology provider within their borders.
• On average, children in the United States travel 57 miles to reach the nearest pediatric rheumatologist. In contrast, children need to travel less than 25 miles to reach pediatric specialists in cardiology, endocrinology, and many other fields.
• Pediatric rheumatologists attribute the current shortage to low salaries, inadequate reimbursement, and poor working conditions. At the assistant professor level, pediatric rheumatologists’ annual salaries average $115,022. In contrast, average salaries for pediatric cardiology, neonatal medicine, and pediatric critical care medicine at this academic rank are more than $144,000.

Part Two: From my Rheumotologist

My pediatric rheumatologist estimates that there is no more than 250 pediatric rheumatologists worldwide, with the former soviet union having none, as well as all the third world countries and many first- and second-world countries. I will add more information to this section tomorrow. I cannot get to my writing pad with the other notes on the matter.

Then Sings My Soul Saturday - On the Outside Looking in

I was looking through my "edit posts" page, and saw this in the drafts from quite a while ago (Try April 26!). Whoops!

"On the Outside Looking in" by Jordan Pruitt was my anthem for a long time. Well, it still is, I just have more of them now. When I became sick, I lost the few friends my own age that I had. Before that, I was bullied and disliked...by all the girls at least. In thinking about it, I was better off having no friends than putting up with the "friends" I did have. I eventually got some friends, but one of two moved away, and the other I am never able to see. Anyways, I don't want to get into that. Here's the point of this post- I love and relate to this song and wanted to share it with you.

You don't know my name
You don't know anything about me
I try to play nice
I want to be in your game

The things that you say
You may think I never hear about them
But word travels fast
I'm telling you to your face
I'm standing here behind your back

[Chorus:]
You don't know how it feels
To be outside the crowd
You don't know what it's like
To be left out
And you don't know how it feels
To be your own best friend
On the outside looking in

If you could read my mind
You might see more of me than meets the eye
And you've been all wrong
About who you think I am
You've never given me a chance

[Chorus:]

Well, I'm tired of staying at home
I'm bored and all alone
I'm sick of wasting all my time

[Chorus (x2):]

Click here to go to a Youtube video of this song.

Juvenile Arthritis Prevalence (Including JDM!)

For some reason, when checking statistics, I was really caught off guard when it came to the statistic I really should know.

-The estimated U.S. population in 2008 was 304,059,724 [1]. The estimated percentage of people under eighteen years of age was 24.3% [1]. Per my calculations (I've checked a couple times, but please feel free to check me), that means approximately 73886512.9 people in the U.S. are under the age of eighteen.
-At least 294,000 children in the U.S. have arthritis. [2]
-73886512.9 divided by 294,000 equals 251.3. Lets round that. That means (provided that my sources are accurate and that I have calculated correctly), approximately one per 251 children have arthritis.

To put that in perspective, approximately one in 316.5 children will be diagnosed with cancer before the age of 20[3], and approximately one in 600 children (a person under 20) have type-1 diabetes [4].

-The number for children with juvenile idopathic arthritis (also known as pediatric rheumatoid arthritis) is anywhere from 30,000 to 50,000, [5] meaning approximately one in 1,477.7 - 2,462.8

-My type of juvenile arthritis, juvenile dermatomyositis, has extremely little prevalence information. I know of one child with JDMS in my state after four years of being diagnosed, whereas I've met many more with other forms (mostly JIA).

• Per the Professional Guide to Diseases (Eighth Edition, 2005) the annual DMS incidence is 1 in 100,000 people, implying that there are 3,040 people in the United States with DMS [6]. I do not know whether this is just DMS, or DMS and JDMS (it is not said in the source), although it is cited on Wrong Diagnoses under "Juvenile Dermatomyositis".

• Per The Five Minute Pediatric Consult (2008), the incidence is 1 per 200,000. Once again, it is not specified if this statistic is for DMS, JDMS, or both, although I assume that it is for JDMS due to the title, but, being unable to read the context, I could easily be mistaken. The same book also states that the average age of onset for JDMS is seven years, and that the overall male/female ratio is 1:1.7 for those over ten years of age, and for those under ten years, the ratio is equal.

• There is also an interesting article in the Oxford Journals regarding the incidence in the U.K. and Ireland. If I am interpreting correctly, they estimate the incidence rate to be 1.9 per 1,000,000 children aged under the age of sixteen years. (So, approximately 1 per 500,000?)

Additionally, juvenile dermatomyositis is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Dermatomyositis, or a subtype of Dermatomyositis, affects less than 200,000 people in the US population.

Please keep in mind that I am just fourteen years old. My math may be wrong, my source interpretation may be wrong, or the source itself may be wrong. Please, don't just feel free to correct me, but, I beg, if I am mistaken anywhere in this, please correct me!

Sources:
[1] U.S. Census Bureau
[2] Arthritis Foundation
[3] Cure Search says that approximately 300 boys and one in 333 girls will develop cancer before twenty. That averages to one in 316.5 (300+333=633/2=316.5)
[4] National Institute of Health (**Warning: PDF file!**) states that 300,000 - 500,000 people in the U.S. have Type 1 Diabetes, with 123,000 of them being younger than 20 years of age. 73886512.9 divided by 123,000 equals 600.7
[5] National Institute of Health (**Warning: PDF file!**) states that 2.1 million people in the U.S. have rheumatoid arthritis, with 30,000 - 50,000 of them being under the age of 20. 73886512.9 divided by 30,000 equals 2,462.8, and 73886512.9 divided by 50,000 equals 1,477.7
[6] Estimated population divided by 100,000 to determine how many times the "one" ought to be multiplied.