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Blood drive to support teen with rare blood disease

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Paula Berry said one of the most difficult days of her life came when she learned that treatment for her daughter’s rare blood disorder may not be covered by insurance.

Megan Berry, who suffers from Atypical Hemolytic-Uremic Syndrome, a condition which causes abnormal blood clots to form in the small blood vessels of the kidneys, was initially denied treatment by her father’s health insurance provider.

The treatment and medication for the condition without insurance is $55,000 for each dosage, which is administered every two weeks.

“How do you tell your 19-year old daughter that if you sell everything you own, you could only keep her alive for two months,” Paula Berry said.

Thanks to the Genetic Information Nondiscrimination Act, more commonly known as the GINA act, however, Megan Berry cannot be denied coverage based on a pre-existing genetic disorder.

“We had to fight for it, but we finally got it,” Berry said.

Berry said that she is concerned about what happens when Megan is no longer covered under father’s insurance plan, but said she will cross that bridge when they get to it.

“This is an ultra rare blood disorder. Once it gets activated, it is never inactivated. It just starts destroying everything. It leads to renal failure, and beyond that, the rest of your organs can start to shut down and you can die.”

Berry said only about 600 people worldwide will be diagnosed with the disorder, and said there is not enough research yet to determine an average life expectancy for people with the condition.

“It is genetic. Her grandfather and his sister both died of this, she in 1975, and he in 1998. Her prognosis, as long as she stays on the medication is good, but there is no long term study yet.”

Bailey Malik, support staff with Veracity Research Investigations Co. in Argyle, the company for which Paula Berry works, said when the company learned what was going on, they asked how they could be of assistance.

“We asked Paula what we could do to help out, and she said a blood drive would be helpful,” Malik said. “She doesn’t actually get our blood, but it goes into a bank, and the blood goes into the bank in her name.”

Berry said it means a lot that her company would hold this blood drive in her daughter’s name, based on her family’s past experiences with blood donations.

“Part of the reason for the blood drive is that when Megan was hospitalized, she received two whole blood transfusions, and then she received 25 bags of plasma,” Berry said. “So, roughly, 56 to 57 people donated their blood to save her life.”

Berry said her daughter is doing well today, and that there are no outward symptoms of the disorder.

The Megan Berry blood drive will be held by Carter Blood Care in Argyle at 111 Dallas Street on Friday, Sept. 14, from 8:30 a.m. to 2:00 p.m.

What: Blood Drive benefiting Megan Berry

When: Friday, Sept. 14 from 8:30 a.m. – 2:00 p.m.

Where: VRC Investigations, 111 Dallas Street, Argyle, TX 76226 (next to Kwik Kar)

Learn More: www.carterbloodcare.org or 800-366-2834

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