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Re: unbalanced translocation chromosome 15

Posted by Dr.sreelatanair on 2/14/2004, 7:45 am, in reply to "Re: unbalanced translocation chromosome 15"
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I have come across a few cases of this rare translocation and finding more about it. whats your experience? get me the details . --Previous Message-- : : --Previous Message-- : unbalanced translocation chromosome 15 : anyone with any information on this? : A family with 2 young boys ages 4 and 2 : havent been able to locate anyone with : this rare disorder and are looking to : correspond with someone whether in the : medical field or maybe has a child of : their own with this disorder. Their : physician too, has never heard of : anyone with this so your help is : greatly needed. : Here is their story: : Jan 2, 12:20 PM : EST : Rare Chromosome Disorder Hits N.Y. Boys : By CAROLYN THOMPSON : Associated Press Writer : : : MACHIAS, N.Y. (AP) -- Four-year-old : Dalton Eisenhardt and his 2-year-old : brother, Wyatt, don't protest or : complain about the machines that hold : onto them with tubes and cords during : every moment of their lives. Despite : the tracheotomies, the feeding tubes : and ever-present nurses, the boys : smile. : It is harder for those who love them. : The young brothers are fighting a rare : and puzzling chromosome disorder, and : doctors in Buffalo, 45 miles north, : have been unable to find anyone : anywhere with the same condition. They : cannot tell the Eisenhardts what might : come next, what toll the disorder : ultimately will take. : So far, dozens of hospital stays, : surgeries, doctors' appointments and : consultations have produced only more : questions. The family hopes that by : telling its story, a doctor or other : parent will recognize the disorder and : tell them what to do. : "We don't know what to : expect," said their mother, Vicki : Eisenhardt, in the living room where : she spends most of her time caring for : her two youngest sons while her husband : works as a carpenter. A 10-year-old : brother, Tyler, is healthy. : : : "What we know we've learned from : Dalton," she said. : The boys have a disorder called : unbalanced translocation chromosome 15. : Their mother explains the chromosome : has an extra piece, a slight defect : that affects every organ in the boys' : bodies. : A year ago, doctors gave Dalton six : months to live, saying the damage to : his lungs was too great. : "Here we are a year later," : his mother said. "Doctors can : speculate, but only God knows." : "We're not giving up," added : her sister, Kim Claus, one of several : nurses who cares for the boys : full-time. : Dalton has been hospitalized 34 times : and undergone 19 surgeries. Worrisome : episodes where his skin grows gray and : clammy have been increasing. Wyatt : spent 100 days in intensive care after : his birth. His problems have mirrored : his brother's. : Snuggled into his mother's lap one : afternoon this week, Wyatt grinned at : visitors as his brother slept, blue : breathing tubes spilling from both : their necks. On this day, Dalton was : tired and would spend most of the day : in bed. Wyatt was just up from a nap : that had been interrupted to have a : buildup of saliva suctioned from his : tube. : Dalton has an appointment next week : with a specialist in New York City. : This week the family was scrambling to : secure a flight after learning the : small airline that initially offered : tickets could not fly the oxygen tanks : the boys need to breathe because of : federal aviation rules. : "This is not a trip of luxury. : This is a trip of necessity," : Eisenhardt said, frustrated at the : obstacle. : The boys' beds and shelves full of : supplies and equipment have taken over : the living room. Nurses, therapists and : medical supply deliveries create a : revolving door in the family home, and : although insurance pays most costs, : unseen expenses like the electricity : needed to power the machines add up. : But the family does not tell its story : for pity - even their neighbors in this : Cattaraugus County town of 2,400, have : been unaware of their plight. : The family keeps to itself, Eisenhardt : said, but is at the point where answers : are needed. : "When you see your 4-year-old say : he hurts, grabbing his chest and so : tired he can't walk across the floor, : you want to help," Eisenhardt : said. "You're going to do anything : and everything you can to help : him." : : : Hello, : My son, who is 9 years old, was : diagnosed with un-balanced : translocation on chromosomes 9 & : 15. Overall he is healthy, although he : is sick more often that the average : child. He is mentally disabled, : physically he is weak but can get : around pretty good. If I can be of any : help...AT ALL...please feel free to : contact me! kc082694@aol.com :

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Message Thread: unbalanced translocation chromosome 15 - Tracy 1/2/2004, 1:19 pm Re: unbalanced translocation chromosome 15 - Cissy in Florida 11/6/2007, 7:22 am Re: unbalanced translocation chromosome 15 - lori edwards 5/25/2007, 8:08 pm my son was born with an extra piece on 18 and missing piece of 16 my heart goes out to you want info - Christine 12/22/2005, 10:55 am Re: unbalanced translocation chromosome 15 - Kevin 1/26/2004, 11:48 pm Re: unbalanced translocation chromosome 15 - Dr.sreelatanair 2/14/2004, 7:45 am Re: unbalanced translocation chromosome 15 - Amber 10/25/2006, 9:37 pm Re: unbalanced translocation chromosome 15 - Vicki 2/12/2004, 8:14 am « Back to thread

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