True Blood star Deborah Ann Woll says she is eager to start a family with her longterm boyfriend before he is completely robbed of his sight due to a rare disease.
Edward 'E.J.' Scott is diagnosed with Choroideremia (Chm), a degenerative condition that eventually renders a person blind, and his current visual field has shrunk so much, he describes his vision as "like looking through a paper towel tube."
Deborah, 28, says they have about 10 years before his sight is gone completely so she would love to go ahead and have a family so he can enjoy them for a few years before being impaired. She told Glamour, "The vision loss is different for everyone. His grandfather went blind in his mid-forties. That's our basis for E.J. - about 10 years. I didn't grow up imagining my wedding day, so we may not get married, but we're committed for life, and we want kids. I could wait, but his biological clock is ticking!"
But the disease doesn't end with E.J. The disease is linked to the X chromosome, so any daughters they have will also carry the gene. Deborah says she knows of this possibility but she's hopeful. "If we have a boy, he won't have the disease. If we have a daughter, she will be a carrier but most likely won't have severe symptoms. If she has boys, there's a 50-50 chance they'll have it. Our children can be healthy and happy with Chm. E.J. is. Still, when I think of him not seeing our kids, as they grow..."
In the meantime, though, the couple is working on E.J.'s visual bucket list and raising funds for Chm research. "We did the Grand Canyon on the way to Chicago. We did Europe. He was an extra on True Blood this season, and the cast has been really supportive, donating things for us to auction off on eBay to raise money for research."
This is equally beautiful and tragic. We love you, E.J. and Deborah!
Source: Contact Music