“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 |
| Driscoll: Provide room for all kids - Abington Mariner Posted: 05 Jan 2011 07:12 AM PST The Vinson-Owen School has been my children's home away from home for the past 9 years. While the experience has been a positive one for our family, the physical condition of the building has detracted from many aspects of a healthy school experience. The proposed plan to rebuild the school is the right choice at the right time. Meeting space is certainly lacking in the current school. The kids eat in their classrooms. The lunch choices are fewer than other schools and the chance of allergic reactions increases due to nonexistent allergen free areas. All school events are restricted to outdoor areas and are determined by weather. The absence of an auditorium forces school concerts, talent shows and graduations to be held either at Mc Call or Winchester High School. The specialists at V-O are also challenged by logistics. The library is jammed into a small classroom space. The book collection is displayed on limited racks and the librarian has little room to add new materials. The school psychologist has an "office" which was formerly a closet. The art and music rooms are in portable classrooms, which are well past their prime. The six portables in use have outlived their lifespan. The units have begun to fail causing roof leaks, mold growth and other unhealthy conditions. While the style of the school may appeal to some, the design is not conducive for an elementary school setting. Anyone with disabilities, whether temporary crutches or long term challenges, will tell you that V-O is impossible to navigate. The gymnasium, nurse and office are located three stairways away from the art and music rooms. The one stall bathrooms are not large enough to accommodate any physical restrictions or even a clothing change if need be. The building is stretched up the side of a hill, which may allow a connection to the environment but prevents the installation of an elevator needed to make the school friendly to all. I know that V-O isn't the only school in Winchester that has serious physical needs. The current plan to expand and rebuild V-O will not only alleviate the above issues but it will provide much need space for kids at other overcrowded Winchester elementary schools and also move up the schedule of the master plan to address building issues district wide. Please join me in voting yes on Jan. 11 and help Winchester provide Room for All. Brendan Driscoll, High Street, Vinson Owen and McCall parent 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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