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Little girl's rare disease worsens

Abigail Haynes heads back to NYC for fifth surgery

POSTED: December 1, 2013 1:00 a.m.

Abigail Haynes, an 18-month-old girl who lives near Dahlonega, is traveling to New York City next week to receive her fifth treatment for a rare and worsening vascular disorder.

Born with venous malformations, Abigail has undergone four treatments to deal with her unusually thin vein walls, which tend to grow into lesions. The lesions can cause pain, disfigurement and possibly impede or damage important bodily functions such as breathing.

After her latest round of treatments on Oct. 25, Abigail’s doctors thought her disease could be kept under control with yearly follow-ups and periodical laser treatments. However, several days after returning home from New York City, Abigail’s mother, Jessica Haynes, noticed new malformations.

“One is under her tongue, one on her upper lip and one in the back of her mouth that is spreading toward her left temple, eye socket and into her throat and vocal chords,” she said. “We are absolutely heartbroken right now.”

Dr. Milton Waner, Abigail’s physician, diagnosed her with a rare and aggressive form of the disease, which can quickly travel throughout her body spreading malformations along the way, Haynes said. Waner is considered a world authority on venous malformations by the Vascular Birthmark Institute of New York.

“The malformation in her throat is the most concerning,” Haynes said. “It can paralyze her vocal chords, which can prevent her from talking and breathing, and the one near her eye socket can actually leave her blind in her left eye.

“And she seems to be in more pain than she was before.”

Immediately after the new malformations appeared, Waner scheduled an emergency MRI, which was overnighted to his office, and a subsequent surgery. Abigail’s consultation is scheduled for Dec. 10 with her next surgery taking place the following day. The surgery will likely consist of further laser treatments, possible incisions to remove the growths and schlerotherapy, a procedure where an interventional radiologist injects chemicals into the lesion to prevent blood flow thereby causing them to shrink.

The frequent surgeries and trips to New York have left Abigail with an extreme fear of airplanes and doctor’s offices and her parents grief-stricken.

“It is never easy to see your child in pain,” Haynes said. “After her last major surgery, her IV stopped working and the pain medication didn’t take. She started screaming and they had to hold her down. That was probably the most painful moment of my life.”

The treatments have left the Hayneses with extensive medical debt as well. Currently, they are responsible for $53,000 and that number goes up by at least $1,000 with every trip. While they do have insurance, it covers very little of the costs.

“Her major surgery cost $25,000 and insurance only covered $1,200,” Haynes said. “Because there is no medical billing code for what Dr. Waner is doing, it is not recognized by the insurance industry.”

The family has established a donation fund for Abigail at Wells Fargo bank, at 312 E. Main St., in Dahlonega. Checks must be made out to the “Abigail Haynes Donation Fund.” Donations can also be made electronically via Abigail’s Facebook page, www.facebook.com/babyabigailfaith, where the Hayneses also post updates on her treatment.

All excess proceeds from the fund will be donated to the Waner Children’s Vascular Anomaly Foundation in honor of Abigail. The foundation provides financial assistance to children suffering from vascular anomalies, funds research to understand and treat these anomalies, and supports efforts to educate the medical community on vascular malformations.

North Georgia Hair Cutters in Dahlonega is also holding a raffle and selling bracelets to support Abigail’s treatment.


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