“Thumbelina Kids: Tiny as Dolls, They Strive to Fit In - ABC News” plus 1 more |
| Thumbelina Kids: Tiny as Dolls, They Strive to Fit In - ABC News Posted: 05 Jan 2011 10:25 AM PST Jan. 5, 2011 Ian Earley wore preemie clothes until he was 9 months old. During potty training and beyond, he was too small to get on the toilet. And he couldn't reach the sink to wash his hands until he was 6. Ian has Russell-Silver syndrome (RSS), a form of primordial dwarfism that affects 1 in 100,000 babies, according to the National Institutes of Health. Without growth-hormone treatment, boys will only reach an average height of about 5 feet 1 inch, and girls will only grow to about 4 feet 10 inches. "Clothing is a huge challenge," mother Heather Earley of Libertyville, Ill. said, "This past summer, even at the age of 7, Ian could wear certain size 4T shorts. We have to buy him 6-slim jeans due to his height. But they still need to be cinched at the waist." Ian was so tiny that he needed pillows and head insets in strollers and car seats. And well beyond infancy, Ian had to sit rear facing in the car seat because of the weight requirement. In about 40 percent of the cases, Russell-Silver results from the abnormal regulation of certain genes that control growth. Severe long-standing placental insufficiency can also lead to severe intrauterine growth deficiency that resembles RSS. Children such as Ian struggle not only with the mechanics of the physical world but with the social stigma that comes with being unusually small. His mother, a divorced mother of two, fought to get the right diagnosis for her son, one that often eludes pediatricians. She writes about the challenges of living with the syndrome on her blog, Russell-Silver Advocate. "This child has the most amazing charisma of anyone I have met in my life," Earley, 43, said. "He has friends all over the place. When he was 4 and looked like 2, all his friends wanted to pick him up like he was a baby. Even to this day, I want to pick him up, he's so cute and cuddly. "But he knows he is different and knows he is small," she said. "He has some anger issues because his brother is only a year and a half older and three times his size. He is an adorable and loving child but he hates being different." RSS, sometimes referred to as Thumbelina syndrome because of the fragile, doll-like stature of the children, is characterized by slow body growth, poor muscle tone and digestive problems, such as reflux and constipation. Their heads, however, are unusually large, compared to the rest of the body. "Try putting a 12-month shirt over a 3-year-old head," said Earley, half joking that she has considered approaching the Gap about clothing for special needs children like Ian. Unlike dwarfism, where one segment of the body is smaller than the other, RSS is a different kind of short stature; it's perfectly proportionate. Other than their size, "they pretty much look like other members of the family," said Dr. John Graham, director of clinical genetics and dymorphology at Cedars Sinai Medical Center in Los Angeles. But the small children have diminished fat and glycogen storage and many cannot break down sugar. "They are underweight, even as much as people try to over-feed them," he said. "They can go for long periods without eating." RSS is a set of clinical features that results in severe prenatal onset growth deficiency that affects the body, but not the head. In less than half of all cases, the condition begins shortly after conception. RSS can be seen in identical twins, although it only affects one of the fetuses because twinning can disrupt the normal gene regulation. The association with twinning may not be identified because in 10 percent of identical twins, one twin dies early in gestation. Increases in RSS can also be seen with the use of assisted reproduction techniques because the procedures can also disrupt gene regulation. The syndrome is not inherited and there is no demonstrated cause in about half the cases, Graham said. Many of the children suffer from bouts of hypoglycemia. Some have a tendency as adults to develop Type 2 diabetes. "They are programmed [in the fetus] to grow and survive on much less nutrition than anyone else," Graham said. "Their metabolism is set to run on a leaner fuel mixture." Graham estimates that the syndrome is under-diagnosed and as many as 1 in 10,000 children may have the condition. This entry passed through the Full-Text RSS service — if this is your content and you're reading it on someone else's site, please read our FAQ page at fivefilters.org/content-only/faq.php |
| Michael Jackson's Kids Watched Him Die, Witness Says - People Posted: 05 Jan 2011 04:09 PM PST  Michael Jackson Carlo Allegri/Getty "Paris screamed, 'Daddy,' and she started crying," Alberto Alvarez, a logistics director for Jackson, recalled as Janet Jackson, listening in the audience of the Los Angeles courtroom, shook her head and Jackson's mother, Katherine, dabbed away tears. Alvarez testified in the second day of a preliminary hearing in Los Angeles on an involuntary manslaughter charge against Dr. Conrad Murray. The judge will determine whether there's enough evidence for a trial for the 57-year-old doctor. According to Alvarez, when Jackson's children appeared that day in June 2009, Murray shouted, "Get them out! Get them out! Don't let them see their father like this." At the time, Paris was 11 years old and Prince was 12. Jackson was on his back, his eyes and mouth open, as Murray gave chest compressions and attempted mouth-to-mouth resuscitation, Alvarez says. Jackson was later declared dead at the hospital at age 50. This entry passed through the Full-Text RSS service — if this is your content and you're reading it on someone else's site, please read our FAQ page at fivefilters.org/content-only/faq.php |
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