The Ogeka Family

LOGAN’S STORY

Reading Eagle Article from March 17, 2019

Logan, as his father, Alex, puts it, was a healthy boy when he came into the world. Paula had a normal pregnancy and was overjoyed at her son’s birth. There was one thing, though. Logan had an extra finger on each hand and an extra toe on each foot. The Ogeka’s were surprised to learn that the condition, known as polydactyly, is more common than they had realized. It was, they were told, treatable by surgery. So, the Ogeka’s took their newborn son home to western Berks County with the expectation that he would have a bright future.

Then, on Nov. 1, 2013, when Logan was 7 months old, he spiked a fever of 105 degrees and had to be flown by helicopter to Children’s Hospital of Philadelphia (CHOP). It was the beginning of nearly 21/2 years of anxiety as doctors tried unsuccessfully to determine the source of Logan’s ongoing health problems. He would undergo surgery to remove his extra fingers and toes. More troubling, though, was that he would be hospitalized for two weeks for respiratory issues and five days for sinus surgery due to orbital cellulitis. Logan underwent testing for genetic and metabolic conditions, but the tests came up negative.

“Logan’s pediatrician, Dr. Janna Zipp of Wyomissing Pediatrics, was adamant that we see a genetic counselor at CHOP for additional tests,” says Alex, senior director of alumni relations at Kutztown University. The Ogeka’s met at CHOP with Dr. Elaine H. Zackai, one of the world’s leading geneticists, who recommended that Logan undergo a new test called whole exome genetic testing. The test explores every gene in a person’s body. The test cost $25,000, and the Ogeka’s were warned that it would be unlikely their health insurance would cover it. The warning proved prophetic. When their insurance provider refused to authorize the test, Alex wrote a compelling letter saying the procedure would end “Logan’s diagnostic odyssey” and enable him to receive appropriate medical care. It would also help the Ogeka’s decide whether to have additional children. Several months later, they were notified that a third-party medical adviser had reviewed the case and ruled the exome test medically necessary.

On April 1, 2016, the Ogeka’s were notified that Logan had Bardet-Biedl syndrome, one of only 3,000 people in the U.S. with the condition. The news was bittersweet. At last, they knew what was troubling their son. But they had never heard of the condition, which was a mystery even to doctors. “At first, I was relieved, then I was shocked,” recalls Paula. “I was in a fog. I thought, ‘How uncommon was this, and what was it, really?’

“For Alex, the moment of realization came during a consultation with Logan’s eye doctor, Dr. David Goldberg, a Wyomissing ophthalmologist. “Dr. Goldberg told me that our son was going to live a long life but that he would probably lose his sight,” Alex said. “He said we need to make plans, not only for when we’re here, but when we pass on. That’s when it really hit me.”

LOGAN’S FUTURE

The secondary characteristics of Bardet-Biedl syndrome include neurological problems, hypertension, dental abnormalities, lack of the sense of smell and thyroid problems. Logan has been examined at CHOP for many of the primary and secondary aspects of the disorder.

“Logan’s main issues now are his developmental delays and, ultimately, his eyesight,” Alex said. “There’s a chance he already has some night vision problems.” In the meantime, Logan receives speech, physical and occupational therapy at the Berks County Intermediate Unit and attends preschool. And the Ogeka’s are able to control Logan’s eating disorder by keeping a close eye on his food intake. “Persons with BBS lack the ability to feel full when they’re eating,” Paula explained. “As a result, they don’t know when to stop eating.”

Despite his health problems, Logan is pretty much like any other 3-year-old. He loves playing with toy cars and is devoted to watching P.J. Masks cartoons on television. His favorite movie is Disney’s “Moana,” and he’s virtually attached to his iPad. Paula knows that she and Alex must be strong for Logan, but she insists on relishing her son’s childhood. “Some days are harder than others, but you can make yourself crazy if you keep thinking about it,” she says. “We’re going to live each day to its fullest and not think about the future too much until we have to.”

The Ogeka’s are thankful for the help of family, friends, neighbors and even strangers who have embraced their fundraiser, One Shining Moment. And through the Bardet-Biedl Syndrome Foundation, the Ogeka’s have come to know other families across the nation who have children with BBS.

A note from the mother of a boy with BBS in Utah, Alex says, pretty much sums up their feelings about Logan.

“Our son happily lives each day despite the great challenges of living with BBS,” she wrote. “His joy reminds us hope is never lost, and the point of this life is to live.”

What is BBS?

“Thank you for visiting this page that allows us to share Logan’s BBS journey. Our family is determined to help not only Logan but others facing these same daily challenges due to BBS. We have been able to raise over $100K with our “One Shining Moment for BBS” event since 2019. It is because of the love and support of our family and friends that have made this into a reality. Thank you so much for your love and support of Logan and our family. It means the world to us! We are looking forward to 2022.”

- Alex & Paula Ogeka

Donations to the Bardet-Biedl Syndrome Foundation will support research into treatment and care for people affected by BBS as well as education and outreach to families, physicians, and educators.

Please consider making a donation on behalf of Logan and our family by clicking the donation link below and dedicating your gift to “Logan Ogeka.”