During Women's History Month, we are featuring the stories of women who help make the Alpha-1 community great.
Jude’s journey began at 4 weeks of age when, following seizures and emergency brain surgery, he was diagnosed with a vitamin K deficiency and began receiving treatment for this at his home in Coral Springs, Fla. Later, when he began to have liver issues, his physicians assumed it was a residual issue related to the vitamin K deficiency and would improve over time.
Julie and Jude Ward while they were waiting for his transplant
“I was on an online vitamin K deficiency support group and posted my concerns about Jude’s liver,” explains his mom, Nicole Ward. “Another mom on that group suggested we get Jude tested for Alpha–1.”
After Jude tested positive for Alpha–1, his physician reassured Nicole that “most Alpha–1 kids are fine.”
“At the time, I didn’t think much about it,” Nicole says. “I actually thought then, ’how much worse can it get?”
Unfortunately, things got a lot worse for Jude. In December of 2016, after his stomach swelled like a balloon, he was diagnosed with Stage 3/4 cirrhosis of the liver and Nicole and her husband Josef were told he would need a transplant.
In March of 2017, Jude and Nicole traveled to Children’s Hospital of Philadelphia (CHOP) to begin the evaluation process to be placed on the transplant list. What should have been a short transplant evaluation trip, turned into several weeks with Jude in and out of the hospital, living at the nearby CHOP “Gift of Life” house for transplant families in between hospital stays.
Just after his 2nd birthday in April, Jude was officially put on the liver transplant list with CHOP. At that same time, Jude’s dad, Josef, who is in the Airforce, secured a transfer from Florida to McGuire Airforce Base in New Jersey, not far from CHOP. In May, Josef officially moved the family to New Jersey to begin their long, hopeful wait.
After one false hope in early July - a liver was available, but then determined not to be the right size for Jude - the Wards continued their “new normal,” waiting for the call that would change Jude’s life forever. Like Finn’s family, they also hoped for a living donor. But ultimately that would not be the case.
On July 19, during a particularly difficult hospital stay for yet another bout of pancreatitis, they received the message they were so desperately hoping to hear: a liver was available for Jude.
“Jude’s donor was a 3-year-old,” explains Nicole. “I am so overwhelmed with this little one’s family and am carrying them with me like their child is my own now. I hope they will find comfort one day in knowing that we will cherish their decision to donate life forever.”
Jude was discharged on August 3 and continues to recover post-transplant at home with big brother Josiah, 4, by his side.
“We are forever grateful and will think of Jude’s hero and their family every day we look at him,” says Nicole.
“Register to be an organ donor, educate yourself on what that means and don’t let the common misconceptions deter you.”
This story first appeared in the Fall 2017 issue of Alpha–1-To-One Magazine. Subscriptions are free.
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