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When the twin boys arrived Dec. 1 at Hackettstown Regional Medical Center, they had a rare genetic skin disorder called epidermolysis bullosa. The strain the two have is so virulent that it's considered almost certainly fatal by experts.
"It's a heartbreaking disease that nothing can prepare you for," said Rich Morrow, brother of the infants' mother, township resident Suzanne Ostrander.
"They're the cutest little boys," a tearful Morrow said. "You don't know why something like this occurs."
The twins were diagnosed about 10 or 11 days after their birth and have undergone a series of biopsies, Morrow said.
Recent photographs of the twins show the debilitating effects of EB. Their tiny bodies bear the look of burn victims but the scarring is the result of severe skin separation and blistering. That means constant changes of dressings and ointments.
"Every area that is ravished by the blisters has to be covered," Morrow said, speaking Tuesday on behalf of Suzanne and her husband, Jerry.
"You have to learn about this (disease) and take it one day at a time," Morrow said. "Kyle is struggling more than Zach right now. It's just amazing when you look at these two boys and how precious they are."
EB causes blisters and skin separation due to abnormalities in the material that holds the skin layers together, experts say.
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Another family member said the twins have the so-called Herlitz form of the disease, which experts say is often fatal in infants.
United Way of Warren County President and CEO Sarah Brelvi said those who wish to contribute to the fund for the family of Kyle and Zach Ostrander can click here and click on the box marked "Donate to the Ostrander Twins Fund, Give Now."
Contributors also can mail their donations to the United Way of Warren County, P.O. Box 451, Belvidere, N.J. and note the contribution is for the Ostrander fund.
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