1-year-old girl with rare disease finally goes home after receiving lifesaving transplant

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A 1-year-old little girl who was born with a very rare heart condition is finally home after receiving a lifesaving transplant.

 

“We are super, super excited to finally be able to bring her home,” said James Shane, Rori Shane’s father.

Rori Shane is home with her parents after spending most of her life in the hospital.

“Her defect was so rare that there was limited experience with bringing her pulmonary blood system together,” said nurse practitioner Terri Massey. She works for UofL and Norton Children’s Hospital.

Doctors say Rori was born with complex congenital heart disease. She was eventually placed on a heart transplant waiting list.

Late last year, Rori’s parents, James and Jennifer Shane, said her health deteriorated so much that they turned to strangers for help.

Their friend Katie created a Facebook page called “Hope For Rori.”

After pleading for help, the call finally came. Rori got a heart and hope for the future.

“She was successfully transplanted on Dec. 14,” Massey said.

Posted by Hope for Rori on Sunday, December 23, 2018

Four months after the transplant, Rori and her family are finally going home.

Her parents will keep the Facebook page to spread awareness about organ donation.

“It’s a gift that can turn a tragedy into another chance for somebody else which is probably the biggest gift anybody could ever gift,” James Shane said.

Thank you to all our readers who joined us in praying for a miracle.

Original Story:

Mom Desperately Seeking Transplant As Her 16-Month-Old Baby Girl Lies Dying

Mothers will do anything for their children. Whatever they need, most mothers will search to the ends of the earth to find it if they can.

A Kentucky mom is in a desperate race against time as she searches for perhaps the most gut-wrenching thing a mother ever has to search for. A heart for her 16-month-old baby daughter.

Facebook

Aurora “Rori” Shane was born with a heart defect and corrective surgeries have failed. At this point, a transplant is the only option to save Rori’s life. Rori has been on the transplant list for more than 200 days and time is running out. Rori’s mother, Jennifer Shane, says that Rori has spent most of her life living in Norton Children’s Hospital as they wait for a heart. This will be her second Christmas living in the hospital.

GoFundMe

Rori’s mother, Jennifer Shane, has created a Facebook page to explain Rori’s condition and plead with the world to help her find a heart for her little girl.

Rori has been waiting a long time for a heart. Unfortunately, because of her size she has not received many offers, blood type and weight are a key factor, a donor who weights 20-50 pounds is needed and her blood type is A+. Sharing this on social media is a long shot but it has worked and after living in the hospital for almost two years with Rori, I’ve heard firsthand of these stories. So I’m here bare bones about my daughter and her story to strangers which is not an easy thing but if this finds her a heart I would do it a million times over. If someone sees this and can help or get us in touch with someone who can help please let me know here or I can be reached at 503-412-9976. If there is a heart out there for Rori the cardiac transplant team can work with the donor and the donors family, confirm the match and Rori can truly have a real chance. 
Thank you for caring – Jen (Rori’s mom)

Besides medical expenses, which by this point have become astronomical for Rori, having a baby living in a hospital is expensive. There are parking expenses, over-priced meals, time off from work, and more. Rori has a GoFundMe account that you can contribute to if you’re so inclined.

If you’re not a registered organ donor in Kentucky, please consider signing up.

Kentucky Organ Donor Registry

Kentucky Organ Donor Affiliates

Rori was named Aurora from the Old English word “Hope of a new dawn,” her mother says. Right now, we are all hoping for a new dawn and a new life for little Rori.