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Shelby H.
Oregon
Biography
Shelby was born December 11th 1998, the younger of a set of twins, the fourth child born into the family. He was a quiet baby who was more willing to watch what every one else was doing and then try it. Although Shelby was term and healthy he was small and it took him awhile to plump up.
Shelby's early child-hood was fairly typical except that he was diagnosed as ADHD at an early age. The family moved several times, but Shelby managed to prove himself an apt and capable student. He remained curious and talkitive, the kind of child other kids liked and the one the adults interacted with the most. In fact that kid you might see wearing the mask and snorkel in the Starbucks drive thu was my son. You know the one. Yes, that kid. Hilarious, exhausting, all boy.
In early 2009, Shelby contracted an bacterial infection from contaminated spring water. The rest of the family got sick too, but everyone else got better. Although he did seem to recover from that infection, almost his old self, by summer of that year something was off with Shelby. He was deathly white, he seemed to stumble when walking, his fingernail and toenail beds were a deep blue as were his lips. He didn't have any spark in him.
I took him several times to the local doctor and was told he was fine. Finally by February of 2010, I got lucky when the doctor said he saw on Shelby's labs that his 'rheumatoid' levels were elevated. Although this same doctor said that he didn't think there was anything 'seriously' wrong with Shelby he couldn't explain why Shelby was a limp noodle of a kid. Weighing just 65 pounds he was now being carried everywhere by us. His legs simply did not work.
Realizing the local doctor was not going to find out what was wrong, I got on the computer and started searching for a doctor who would know about 'rheumatoid' levels'. On the second day, I hit pay-dirt. At Legacy Emanuel in Portland Oregon there was a Pediatric Rheumatologist and she was willing to see us. A month later we made the four hour drive. This pretty doctor examined my son and then made her conclusion. "It's called Juvenile Dermatomyostitis, she said and it's pretty rare." "About 1 in 5000 kids will get this disease." She went on to say that a third of the children diagnosed were dying at the end of the seventies, but that the odds were much better now Most would live, but half of those would be crippled for life. We had no idea what group Shelby would be in.
The next year was a blur of appointment's, treatments, infusions and meds. At one time Shelby was on 22 different medications. The side effects were horrid; weight gain, mood swings, unable to eat, sleeping all of the time, pain, pain and more pain. In August of 2010 we were chosen by NIH to participate in a Twin-Sib study. Specifically the National Institute of Health wanted to turn my boys right side out to see why one got sick and one didn't. It's an ongoing five year study.
In May of this year Shelby suffered his biggest setback. He was in for a routine port placement at Legacy and due to the port catheter being placed into the carotid, he suffered a major stroke. He lived but with lifelong consequences. My almost 13 year old little charmer is about '9' now. He's walking and talking but he will never be the same. He cannot be left alone, it's as if the stroke sent his ADHD into overdrive. Shelby has a page on The status.com, that I started when he was in the hospital in May, to alert friends and family as to his condition. I was with him from May 5th to June 10th when were finally allowed to go home. I went into the hospital with one child, and came out with another. Five months later Shelby is somewhat better. We can only guess what the future will bring for this little fighter. Though he is nearly thirteen, he still stands only four feet tall, and now that we are weaning the prednisone he's is down to close to what he was before diagnosis. He's a survivor and an outspoken sponsor for his disease. Most of all he's just our boy.
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Birth Date - December 11th, 1998
Main Diagnosis - Juvenile Dermatomyostitis/Lupus Overlap
THEME: Patriotic
"Thank You"
Shelby wants to say thank you very much for the quilt, and he won't let the flag touch the floor!
