Menu

Top Stories

Published on Thursday, July 11, 2019

Two years have passed since the liver transplant surgery that saved Jude Ward’s life

Two years have passed since the liver transplant surgery that saved Jude Ward’s life

Almost two years have passed since Nicole and Josef Ward’s son, Jude, had a liver transplant due to Alpha-1 Antitrypsin Deficiency (Alpha-1). You can read that story by clicking here.

Most people diagnosed with Alpha-1 don’t exhibit symptoms until they reach adulthood, when underproduction of the alpha-1 antitrypsin protein leads to complications in the lungs and eventual lung disease, according to the Children’s Organ Transplant Association (COTA). However, Jude was producing an abnormal form of the protein, which started pooling in his liver, damaging it.

By 22 months of age, Jude was experiencing serious liver problems. In December 2016, he was rushed to an emergency room, where doctors said Jude would need a life-saving liver transplant to survive.

The family quickly got Jude onto the waiting list for a liver transplant at a hospital in their native Florida, did seemingly endless research on liver disorders in children, and eventually joined COTA.

The Wards, who now live on the joint base, ended up having better luck seeking a transplant at the Children’s Hospital of Philadelphia.

“On July 6, 2017, at 7 am, we got our first call that the hospital had a possible liver match for Jude,” Nicole Ward recalled. “We spent the entire day at the hospital doing pre-op tests on Jude and making him fast only to find out at 9:30 pm that upon retrieval of the liver it was determined not to be the best match for our Jude. We went back to our temporary transplant home broken more than ever but still clinging to a little hope that Jude’s call would come soon,” she added.

A couple of weeks later, Jude was back in the hospital for complications of his liver disease. By July 19, doctors had found a match for him, and the next day, he had a successful surgery.

“We were very relieved but could not quite let ourselves believe this was the one until he was wheeled into surgery about midnight that same night,” Ward said.

In the months leading up to the surgery, the Wards said Jude’s body was failing him. He could only take in food through a feeding tube, he needed infusions to get rid of excess fluid in his stomach, he was tired all the time but could not sleep comfortably, and he would get bruises and sores that didn’t heal.

Though Jude, now 4, had a successful transplant, it still impacts his life in small ways, as he must make frequent visits to the transplant center for lab work, checkups and adjustments to his immunosuppression medications, his family said.

While the family temporarily lived in Philadelphia at the Gift of Life Family House, COTA was able to raise more than $60,000 for COTA in honor of Jude and his medical expenses.

The family also fears they might go through a similar journey all over again. Their daughter Lucie, born last July, has the same deficiency. She is now in the process of receiving regular lab work to check her liver enzymes and regular ultrasounds.

“We do not know where things are headed with Lucie and a liver transplant, but her doctors are keeping a close eye on her,” Ward said.

“Life after transplant is a balance of enjoying life but also being mindful of keeping Jude healthy. The biggest blessing our family has received is the blessing of perspective,” she finished.

Sources: Burlington County Times, Children’s Organ Transplant Association

Photo courtesy of the Children’s Organ Transplant Association.


Print

Two years have passed since the liver transplant surgery that saved Jude Ward’s life

Thursday, July 11, 2019
Almost two years have passed since Nicole and Josef Ward’s son, Jude, had a liver transplant due to Alpha-1 Antitrypsin Deficiency (Alpha-1). You can read that story by clicking here. Most people diagnosed with Alpha-1 don’t exhibit...
Divider

Dicerna to begin clinical development of DCR-A1AT for treatment of patients with Alpha-1-associated liver disease

Monday, July 8, 2019
Dicerna Pharmaceuticals, Inc. announced it submitted a Clinical Trial Authorization (CTA) application to the Swedish Medical Products Agency (MPA) to conduct a first-in-human Phase 1/2 study of DCR-A1AT, an investigational therapy from the...
Divider

FDA grants fast track to Alpha-1-related liver disease drug

Friday, June 28, 2019
Arrowhead Pharmaceuticals Inc. announced that the U.S. Food and Drug Administration (FDA) has granted fast track designation to ARO-AAT, the company’s second-generation subcutaneously administered RNA interference (RNAi) therapeutic being...
Divider

Watch the 28th Annual Alpha-1 National Conference from home

Tuesday, June 18, 2019
The Annual Alpha-1 National Conference is the largest annual gathering of Alphas, their families, leading healthcare professionals, including researchers, physicians, scientists, respiratory therapists, nurse practitioners, and industry...
Divider

The Annual Alpha-1 National Conference: The largest gathering of Alphas

Tuesday, June 18, 2019
The city of Orlando, Florida, will be the site of the largest gathering of Alphas, caregivers, family members, researchers, industry representatives, and the Alpha-1 community at large, as the Alpha-1 Foundation holds its 28th Annual Alpha-1...
Divider

CSL Behring initiates voluntary recall for 4 lots of Zemaira

Thursday, June 6, 2019
The Alpha-1 Foundation was informed by CSL Behring that a Voluntary Biological Product Recall is being initiated for 4 lots of Zemaira®, their prescription drug for augmentation therapy for the treatment of Alpha-1 Antitrypsin Deficiency...
Divider

Here’s the “Scoop” on the Iowa Walk

Tuesday, June 4, 2019
Filled with families, friends, laughter and of course, ice cream, the Iowa Alpha-1 Get the Scoop Walk is one not to be missed. Like most walks, it was started with a small group, and now, 11 years later, this walk has become one of the most...
Divider

Alpha-1 Hero Walk raises funds and awareness for Alpha-1

Thursday, May 23, 2019
The 9th Annual Alpha-1 Hero Walk took place on May 4th, in Richmond, VA, where 75 attendees walked to raise awareness and funds for Alpha-1 Antitrypsin Deficiency (Alpha-1) research and related programs, exceeding $11,000. Pamela VanScoy, Walk...
Divider

Alpha-1 Foundation celebrates the 2019 research grants

Tuesday, May 21, 2019
The Alpha-1 Foundation (A1F) hosted a reception on Monday, May 20, 2019, to honor the newly awarded research grant recipients, where 158 guests joined at the Perot Museum in Dallas, Texas, in conjunction with the 2019 American Thoracic...
Divider

New method could help find potential treatments for rare diseases

Monday, May 20, 2019
Finding treatments for rare diseases is difficult: because they affect such a small number of people, research funding and other resources may be limited. Even if researchers are interested in studying a rare disease, the methods for testing...
Divider

Celebration of Life 2019: “Alpha-1 Derby: Betting on the cure”

Friday, May 10, 2019
On Monday, April 29th, the Alpha-1 Foundation welcomed friends, family, physicians, researchers, and industry partners to the 19th Annual Celebration of Life, the Foundation’s signature fundraising event in Miami Beach, Florida. The event is...
Divider

Funding for NIH increased after House Appropriations Committee approves funding bill

Friday, May 10, 2019
The House Appropriations Committee approved the fiscal year 2020 Labor, Health and Human Services, Education, and Related Agencies bill, on Wednesday, May 8, 2019. The legislation includes funding for programs within the Departments of Labor,...
Divider
12345678910Last

Article Search

Enter keywords in text box and click Search button for results.

Archive