Our daughter, Hannah just turned 8 on the 27th of Aug. 2011, 3 days later was diagnosed with DC. She was a tiny 4 lb. 11 oz. at birth, but was a healthy baby with no issues except both her baby toes were fungal-looking. She also had a twin that was lost very early on. She has had very itchy skin since a baby, has had styes in both eyes alot, rash around her mouth area that would come and go. She has always been small, always below the charts. At around age 4-5 she started having problems swallowing, which progressed to the point she couldn't swallow her saliva. She was in the ER several times, but they found nothing. When the swallowing became a daily problem, she was admitted at the hospital where they tried to do an endoscopy, but couldn't get the scope in beyond a stricture and some webbing. They put in an NG tube and tried again with the endoscopy, this time it went in. The pictures showed alot of white patches, bleeding and peeling. She had the NG
tube out 2 months later cause she could swallow again. Several endoscopies later; dermatologist visits, due to her skin progressing to being blotchy, severely dry and bruising; rheumatologist visits where they did another CBC and found her platelets low and red cells low, pretty much everything that should be high was low and what should be low was high; back to dermatology then to genetic counselor, then to hemotology/oncology. They sent a test to Vancouver, BC to check her telomeres, still waiting for that test back. This has taken about 4 years of confusion and we wanted to know what it was of course. Now we know and wish we'd never heard of this! We're scared out of our wits! Please, any advice will be appreciated. I'm just so glad there is a place like this for something so rare.
Gail Corn
cornygal@aol.com
