Abby Woodley, who recently received a liver transplant, is battling an ultra rare disease that affects 1 in 100,000 people
By Samantha Bambino
The Times
Three years ago, Langhorne’s David and Catherine Woodley made a decision, one that would change multiple lives forever.
In October 2015, the couple adopted Abby, a newborn baby girl whose family was forced to return to China because of visa issues. The Woodleys embraced the child as their own despite her diagnosis of Methylmalonic Acidemia (MMA) — an ultra-rare disease that causes a buildup of acid in the body, resulting in vomiting, dehydration and eventual death if not constantly treated with IV fluids. Abby’s level of severity affects only one in 100,000 people.
The Woodleys selflessly cared for their daughter, making it their mission to do whatever it takes to help her lead a full life. For three years, Abby was admitted to the hospital nearly every six weeks, with each inpatient stay lasting three to seven days.
“It was a lot. We had a lot of ups and downs with her,” David said. “A couple times, we thought we were going to lose her because of how poorly she was doing.”
But in April 2018, a possible step toward improving Abby’s condition was found in a liver transplant. While Abby didn’t have liver failure, her MMA prevented her body from producing enzymes, often formed in the liver, that break protein into amino acid. This causes the acid buildup as well as muscle and brain development issues. The hope was that a new genetic liver would alleviate some of the problem.
On Aug. 28, the transplant surgery was performed at Children’s Hospital of Philadelphia and so far, Abby is exceeding all expectations.
“The change that we see in her, just in the three weeks she’s been home, has been night and day,” David said.
For the first time since she was 3 months old, Abby is desiring food and will soon transition from a broken down baby formula to a nutritional supplement shake. Her cognitive abilities are also strengthening every day as she learns new words and easily completes tasks that were previously a struggle.
But the Woodleys understand Abby’s journey is far from over, and complications from the surgery and MMA could appear unexpectedly at any moment. To ensure the family doesn’t suffer financial hardship, especially with transplants often exceeding $800,000, the Children’s Organ Transplant Association is rallying local volunteers to help raise $40,000.
The mission of COTA, a national 501(c)(3) charity, is to help transplant families avoid financial devastation. Funds raised through COTA aid with transplant-related costs, including medication, transportation to and from the hospital, lodging, and expenses while parents are out of work and often living with the hospitalized child far from home. Since these out-of-pocket expenses can add up to tens of thousands of dollars annually, COTA helps bridge the financial gap.
“People don’t always think about all the related costs,” said Bobby Frehafer, community coordinator. “COTA is there to support families in the long term.”
The liver team at CHOP introduced the Woodleys to the organization. The couple was informed about how people can donate to their cause through COTA, which works with the IRS to ensure no one gets penalized for tax reasons. After a group of volunteers was formed to help with the project, a goal of $40,000 was set.
“This is a lifetime program. So any funds that are raised through COTA in honor of Team Abby will be available as long as she’s alive,” Frehafer said.
So far, the Woodleys have been amazed at how people have rallied behind Abby. Earlier this summer, COTA representatives flew in from its headquarters in Indiana to brainstorm fundraising projects. Despite hectic schedules and the bustle of everyday life, 30 locals brought energy and ideas to the meeting.
“It really is amazing. It really touched my heart and it hit my wife real hard as well, just how much love there is for our little girl,” David said.
When taking into consideration the Woodleys’ strong, positive presence in their Langhorne community, this outpouring of support doesn’t exactly come as a surprise. Catherine, a Georgia native and NICU nurse at CHOP, moved to Langhorne to marry her husband, whose local roots run even deeper.
As a teen, David studied at Cairn University, formerly Philadelphia Biblical University, followed by years of volunteer work at Bucks County Community Church. Today, he continues his work as a youth pastor, teaching more than 40 students every week, in addition to assisting with the Neshaminy High School football team in the off-season.
Moving forward, the Woodleys will continue to do everything in their power to bring Abby to full health. Currently, a cure for MMA called gene therapy is in the works, which David said is nearing completion. Until then, he and Catherine are remaining humbly grateful for any support their community can provide.
Those interested in donating to Team Abby can do so online at cota.org/campaigns/cotaforteamabbyw by clicking the “give now” button, or at a fundraising event. Happy Birthday Abby! will take place Sunday, Oct. 28, from 2 to 5 p.m. at Bucks County Community Church, 1249 W. Maple Ave., Langhorne. In lieu of gifts, please make a donation to COTA in honor of Abby online. If interested in attending the party, RSVP at [email protected]. To volunteer for the community campaign, contact Melissa Frehafer at [email protected] or 215–530–3114. ••
Samantha Bambino can be reached at [email protected]
