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by Terri Hogan
Senior Staff Writer
Olney twins Matthew and Jacob Savage celebrated their first birthday on April 22.
While the occasion marked a year of milestones for Matthew, it marked a year of struggles for Jacob, who is awaiting a life-saving liver transplant.
When the identical twins were born, both babies developed jaundice. Phototherapy helped Matthew recover, but not Jacob.
“Jacob has an undiagnosed liver disease,” his mother, Debbie Savage, said. “Every test comes back abnormal, but they don’t know what is causing it.”
Jacob has dark skin and yellowed eyes. His liver has scarring and cirrhosis, which will lead to organ failure. A transplant is the family’s only hope.
Savage said the doctors have determined that they need to find a cadaver organ because Jacob’s anatomy would not support an adult or “cut down” liver.
“While we are praying for a liver, we know that it means a child will have to pass away,” she said. “Knowing the cost of where it will come from is incredibly heartbreaking.”
Jacob is on the transplant list at MedStar Georgetown University Hospital and at Cincinnati Children’s Hospital Medical Center, which has a highly regarded transplant program and a shorter waiting list.
A liver transplant comes with an extremely high cost, which is of grave concern to Debbie Savage and her husband Brandon.
Brandon Savage is the breadwinner, working as a self-employed software consultant. Debbie Savage works full time as a civil engineer because they need the health insurance her job provides.
The finances are already difficult to cope with.
Debbie Savage said their insurance policy has a $4,000 deductible per person, which Jacob met Jan. 1.
While Debbie says they are blessed to have insurance, there are many expenses that it does not cover, including Jacob’s specialty formula, additives, vitamins, medications and copays.
And costs are likely to escalate.
Jacob will be on immunosuppressant drugs for the rest of his life. Insurance will cover some of his medications, but there is a monthly cap.
Then there are the travel costs, which will be significantly increased if the transplant occurs in Cincinnati. They have been told to expect Jacob to be hospitalized for a minimum of eight weeks, and that he will require six to eight additional visits over the first year.
The Savages received a phone call in March that a liver had been found and they rushed to Georgetown. It was later determined that it was not the right size.
“That was the most heartbreaking day of this journey,” Debbie said.
Savage said she held off planning the first birthday party for her babies because she was not sure if Jacob would be in the hospital. They had a small family gathering and she is grateful they could all be together to celebrate.
The babies were born prematurely at 33 weeks. Matthew is now doing what a 1-year-old should be doing — crawling, babbling, eating food, pulling up and cruising on furniture.
Jacob is fed through a feeding tube. He suffers from slow weight gain, extreme itchiness, vomiting, an intolerance to dairy and delayed development.
The babies cannot be together because they cannot risk Matthew pulling out Jacob’s tube.
The journey has been isolating for the family. Because they cannot risk the babies getting sick, they cannot risk sending them to a day care center.
Instead, they have an au pair and a nurse who help with Jacob’s care at home.
The Savages have lived in Olney since 2010. They have received support from their Salem United Methodist Church community and local family members, but they could use more help.
“It’s been hard,” Savage said. “I think Olney is a great place if you have older kids and can meet other people, but we really haven’t been able to do that. We do what we have to just to keep the kids alive and keep sane.”
Two fundraisers are planned to help with transplant-related expenses.
On May 3, Buffalo Wild Wings in Rockville and Gaithersburg will donate a percentage of sales 5-9 p.m. to support Jacob.
On May 18, The Greene Turtle of Olney will donate a percentage of the day’s sales to Jacob’s fund. The Greene Turtle event requires a flier, available at www.facebook.com/events/1825814117683941/ .
Those wishing to donate can do so in honor of Jacob through Children’s Organ Transplant Association at https://cotaforteamjacobs.com/.
Terri Hogan can be reached at firstname.lastname@example.org.
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