Olivia Rose and Sophia Grace Dikeman are just like any other teenagers.
The 14-year-old identical twins are big Philadelphia sports fans, they enjoy visiting the beach every summer, hanging out with their friends and playing softball.
Now in seventh grade at Brandywine Springs School, the girls have played on the same softball team since their tee-ball days.
Much like other sets of twins who are closely in tune with one another, Olivia and Sophia often finish each other’s sentences.
One thing they share, that other teens do not, is a rare blood disorder they were born with called Diamond-Blackfan anemia (DBA).
This blood disorder primarily affects a person’s bone marrow and prevents their bodies from producing enough red blood cells.
Without a bone marrow transplant, complications with the disease could lead to serious health problems for the girls down the road, including cancer.
Their family is on a desperate hunt for bone marrow donors for a life-saving bone marrow transplant.
What is Diamond-Blackfan anemia?
Born premature, the twins were diagnosed with the disorder at three months old following a routine wellness check and a bone marrow aspiration that showed they had low hemoglobin levels.
Test results also showed that both girls tested positive for a specific ribosome that is indicative of the disorder, said Falon Beck, the girls’ mother.
They are only the second set of twins in the world known to have Diamond-Blackfan anemia.
To combat their low red blood cell count, they need blood transfusions every 2 1/2 weeks to prevent their bodies from shutting down.
While Olivia and Sophia’s peers might be catching up on homework at the dining table or from the comfort of their bedrooms, the girls often find themselves hitting the books at the hospital connected to an intravenous line supplying the new blood.
Without a blood transfusion, individuals with the disorder would be prone to headaches, feel weaker and generally appear more lethargic.
“When they were little, we would always be like, ‘you’re getting tanks filled up,’ ” Beck said.
Although they must stick to a rigid schedule with their treatment, the girls have not faced any other major medical issues as a result of their diagnosis, until recently.
Searching for a donor
The frequency of their blood transfusions has left Olivia and Sophia with too much iron in their system. To combat this, they need chelation therapy – a medical procedure done to remove heavy metals from the body – to offset their iron intake.
Within the past nine months, the chelation treatments they have undergone since infancy have started affecting their kidneys, resulting in a temporary pause in their blood transfusions.
The girls underwent a steroid trial in December and January for about six weeks, but their bodies were unresponsive to the new treatment, leaving the only solution to be putting them on a lower dosage of their previous medication, Beck said.
With continued fluctuation and constant adjustments to the treatments needed after their blood transfusions have proven to no longer be as sustainable as they once were, doctors have begun suggesting a more permanent fix – in the form of a bone marrow transplant – sooner than anticipated.
Now, both girls are looking for a bone marrow transplant donor.
Without a transplant, more medical conditions could arise and their current treatment plan could lead to issues with other organs, primarily the pancreas and heart.
“They’re just total sweethearts,” said Ronn Fontana, uncle to Olivia and Sophia. “They don’t want to spend their lives fearing for their lives. Nobody does.”
Becoming a donor
The family is using Be The Match, an organization that matches donors with patients facing illnesses such as leukemia and lymphoma, to reach as many potential donors as possible and hopefully find a match for each girl.
Anyone between the ages of 18 and 39 can sign up with the organization to become a potential donor.
The process is as simple as registering online, swabbing your cheek with a test kit that will add your results to the Be The Match Registry and waiting to see if you are matched with a patient in need.
If a match is found, which can take anywhere from a few months to several years, Be The Match takes care of the entire process from medical expenses to travel costs.
A match will most likely be someone who is genetically similar to the twins, which includes having ancestors from similar geographic locations and being of the same race or ethnicity. Someone matching these criteria has a 70% higher chance of being a match, said Fontana.
For Olivia and Sophia, there is a 1 in 500 chance that any given candidate will be a bone marrow match with one of them.
Although a single match could become a donor for both girls, a successful match is only allowed to donate once per year, meaning the girls and their family would have to choose who would go first.
Similar to most twins, Olivia and Sophia do everything together, and their family has no plans for their bond to be interrupted by varying transplant and recovery journeys.
“I wanna do it together for them,” said Beck. “They wanna do it together.”
As part of the procedure, Olivia and Sophia would need to undergo chemotherapy after their transplant as well as other forms of rehabilitative therapy. Knowing the toll chemotherapy can take on an individual, Beck wants her daughters to recover with each other and be able to support one another, she said.
‘They deserve to live’
Even with the pressure of a bone marrow transplant looming ahead, Olivia and Sophia don’t let their circumstances get them down.
“They’re very healthy. They’re running all the time, they play with their friends in the neighborhood,” said Fontana. “That’s kind of what we want to show. That these are two normal, healthy girls.”
While the family has a goal of getting about 17,000 people to register with Be The Match, having already gotten several hundred, increasing the donor database is as much about helping Olivia and Sophia as it is giving a chance at life to others needing transplants, they said.
The more people that sign up and spread the word, the greater the chance that Oliva, Sophia or any other potential transplant patients will find the match they need.
“I’m just gonna put it bluntly – they deserve to live. They deserve to grow up and fall in love and do all the things you do in life. That a teenage girl would love to do,” said Fontana. “We’re not going down without a fight.”
If you are interested in helping Olivia and Sophia, text “CURELIVSOPH” to 61474, visit the website my.bethematch.org/curelivsoph or scan the QR code in the flyer above.
