Taylor Burden and Jordyn Maddox
Jordyn Maddox of Delaware has end-stage kidney failure and is currently at the Children’s Hospital of Philadelphia.
Before Jordyn was born, doctors diagnosed her in-utero with Autosomal Recessive Polycystic Kidney Disease, a rare and potentially deadly condition that causes low-functioning, cyst-filled kidneys. The doctors did not expect her to make it to birth. Jordyn was very sick when she was born and was not expected to live.
“Once she was born, the doctors looked at her and said there was nothing they could do. We were passing her around, saying goodbye to her,” recalled her mother, Taylor Burden.
Jordyn Maddox
Jordyn was placed in the hospital’s neonatal intensive care unit where she spent three months fighting to get better. After she was released from the hospital, she made it to her first birthday before she needed serious medical intervention. Shortly after her first birthday, Jordyn had to be placed on peritoneal dialysis, a type of dialysis that uses the lining of the belly to filter the blood.
About a month ago, Jordyn was admitted to CHOP after she developed an infection from the peritoneal dialysis. She’s been undergoing hemodialysis at the hospital two and half hours a day, three-days a week, for almost a month. Jordyn is now on the extensive waiting list for a deceased donor.
“Hemodialysis is the last thing that is going to maintain her levels before getting a transplant but it’s also very hard on kids, so it’s not her best option. A living donor is the best option for her,” said Burden, who has launched a movement to help Jordyn find a living organ donor candidate.
The website https://teamjordyn.intuitwebsites.com has been established to share her story.
“My ultimate goal with this is to obviously be able to find a donor for my child, but I also hope to move people with her story and get more people on board and realizing that many others are in similar situations as Jordyn and they have the ability to step up, take action, and save lives by being a living donor.”
Burden describes Jordyn as a very feisty, lovable child who is very intelligent.
“She knows a lot for her age because of all she has been through. Everybody falls in love with her [at] first sight,” said Burden noting that Jordyn is popular with many of CHOP’s nurses.
A CHOP spokesperson said the hospital could not comment on Jordyn’s situation due to patient privacy laws.
Family and friends have taken to social media to bring awareness to Jordyn’s plight.
“It’s more encouraging to know that people are supporting and encouraging us and are behind the movement to help me find Jordyn a living donor,” Burden added.
“It’s hard just knowing that she is going through this but it’s also very encouraging to see how many people are taking action.”
Burden’s push to find a donor for her daughter comes as thousands of people across the country are on the waiting list for an organ transplant. African Americans account for about 30 percent of the more than 118,000 people who are on the national waiting list according to the Organ Procurement and Transplantation Network.
National Minority Donor Awareness Week, which is observed Aug. 1-7, serves to shed light on the need for more African Americans, Hispanics and Asians to become organ and tissue donors. According to the Gift of Life, the local organ procurement organization serving Philadelphia, Delaware and New Jersey, African Americans account for 2,500 of the 6,500 people in the region who are waiting for an organ.
Contact staff writer Ayana Jones at 215-893-5747 or ajones@phillytrib.com.
https://teamjordyn.intuitwebsites.com
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