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Twin sisters diagnosed with rare blood disease need your help finding a cure

 Sophia and Olivia Dikeman
Posted at 9:01 AM, Feb 10, 2022
and last updated 2022-02-11 08:24:31-05

CECIL COUNTY, Md. — Right now, there's a national blood shortage. The American Red Cross is reporting a 10% decrease in the amount of people donating blood since the beginning of the pandemic.

Donating blood can save a life.

For 14-year-old twins, Sophia and Olivia Dikeman, they rely on blood donations. They were diagnosed with Diamond Blackfan Anemia when they were only a few months old.

"Their body does not produce mature red blood cells so in order for them to survive they require blood transfusions," said Falon Beck, the girl's mom.

Their entire life, the girls get blood transfusions every 2.5 weeks.

"This is their life they literally know nothing different," said their dad, Ernie Beck. "When they’re low, I think, they’re somewhere between 7-8 in their hemoglobin. We’re 16 so they’re half of what it should be. It’s literally like you're running out of gas on their tank."

They're so in tune with their bodies, they know when they need blood. They can feel it.

"My headaches got worse . They started like one day and then they come came back the next day," said Olivia. "And I have it during the night and during school which isn't good.

Sophia added, "When I'm, playing outside or walking, i can feel myself going slow.… and I'd have it during the night and during school because I wasn’t paying attention."

The only cure is a blood stem cell transplant, which they need a donor for through 'Be The Match,' a worldwide registry dedicated to finding donors for people with life-threatening blood diseases.

Sophia and Olivia were just put on the registry this past December.

"We would have done this years ago. However, they were able to maintain and were doing good with the blood transfusion so they weren’t eligible or wouldn’t be considered prime candidates for a stem cell transplant," said Ernie.

"We’ve been really fortunate with there health for the past 14 years that they’ve always done great," Fallon added. "Up until this fall is when we hit a bump in the road with their treatment."

The blood transfusions are taking a toll on the twin's kidneys. Doctors tried a steroid treatment, but it didn't work so now they're hoping for a match. One person can be a match for both girls, but the best case scenario would be two separate donors so the girls can go through the process together.

Their dad said, "we're confident that we’re going to find a match and get them cured. Time frame? It'll happen when it’s supposed to happen."

So far the Becks have gotten more than 300 people to sign up on the Be The Match registry. Their goal for the year is 17,000. They ultimately want to help their daughters but also others who need a match too.

"If you can’t find a match for us it would also be helping people who need this," said Sophia.

"I hope that we could get a match so we won't have to go through this anymore," Olivia added.

Technology has changed over the years making it easier for people to donate for a stem cell transplant. They used to have a more invasive procedure to get what they need but now 80% of cases is similar to giving blood.

To register, click here or text "CURELIVSOPH" to 61474. You just have to answer a questionnaire that will take only a few minutes out of your day. Then, you'll get a kit in the mail to swab your cheeks, and send it back at no cost to you. You'll get contacted if you're someone's match. 

You can also just donate blood to make sure there's a good supply for the twins and others who may need it. Locally, the Red Cross has seen around a 40 percent decline in new donors over the past year, specifically in the National Capital and Greater Chesapeake region.

For more information or to find a way to donate, click here.