The Capital, Annapolis, Md.
Oct. 15—Anne Arundel County Firefighter Sean Moore and his wife Danielle are hosting the first fundraiser for their son who had liver surgery this year at two months old.
Earlier this year, Danielle gave birth to Jonah, their second son, and soon found out he had an incurable condition, biliary atresia. Biliary atresia is a blockage in the tubes (ducts) that carry bile from the liver to the gallbladder. According to Hopkins Medicine, the condition occurs when the bile ducts inside or outside the liver do not develop normally. Biliary atresia is a rare disease affecting 1 in 8,000 to 1 in 18,000 live births worldwide, according to the American Liver Foundation.
“We noticed the whites of his eyes turning yellow and his skin tone was turning yellow and also he was eating less and less,” Danielle said.
It was determined that Danielle was a perfect match for Jonah as a living donor. Danielle said they had many family members that were willing to donate their livers. They learned through Medstar transplant institute that if a parent’s blood type is compatible with the child, they want to start with the closest DNA possible. Sean and Danielle went through the evaluation process and they both were good matches, which is rare, she said.
“They said we could pick who would give the liver and we said Sean would do it but after extra testing, they said I would be the better fit,” Danielle said.
On Aug. 19, they both underwent hour-long surgeries to complete the transplant.
“This two-month mark is a celebration for us and we are on the right path,” Danielle said. “Jonah’s recovery, in the beginning, was a little bumpy but since he got home it is like we have a new kid. He has so much energy, he is eating and he just got his first tooth. We are experiencing typical baby things.”
Danielle’s recovery has been quick and the only thing she is unable to do is lift her kids.
“The amount of support has been overwhelming and we have had family visiting safely,” Danielle said. “Our community and neighborhood have been so generous and giving us things we need.”
Sean has been a firefighter at Station 30 in Pasadena for almost five years.
“Every career he has had always connected with him helping other people,” Danielle said. “As a firefighter in the county most are EMT trained, so he has been so patient with our family. He has been that backbone for us.”
Their first fundraiser “Pasta with a Purpose” will be held on Tuesday, the two-month “liverversary” and during Liver Awareness Month. Jonah’s Biliary Atresia Journey will donate 20% of the dine in and takeout proceeds from the fundraiser at Bella Italia Arnold to The Children’s Organ Transplant Association. The fundraiser will go from 4 p.m. to 10 p.m. You can follow Jonah’s journey via Facebook- https://www.facebook.com/jonahsbajourney.
“This is a lifelong condition he will have and this fundraiser will provide coverage for him in the future, so finances aren’t a restraint for him taking care of this organ and his health,” Danielle said.
Before this year, the Moore family would think of October as Breast Cancer Awareness Month. They started getting educated when they learned about Jonah’s conditions and found out more about Liver Awareness Month.
Danielle said COVID-19 has added an extra layer of complexity to this process.
“It was this whirlwind that we could only have one parent stay with Jonah in the hospital,” she said. “This whole summer the visitations rules changed constantly. Some of our family still haven’t been able to see Jonah.”
Danielle said the nurses at the University of Maryland Children’s Hospital in Baltimore and the Georgetown Transplant Institute have become a second family to them.
“They are caring for Jonah but they (were) that shoulder to lean on and that friend to chat with about anything, when you couldn’t have that other parent or family to visit,” she said.
Jonah’s strength through this process will inspire many kids like him through his journey.
“To see his fight through every phase of every poke and prick and operation, everyone tells me he is so resilient. He smiles more than my other child and he is just so smiley,” Danielle said. “We picked his name Jonah which means dove in Hebrew and a dove represents hope.”
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