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

Alpha Jonathan Maidment goes back to the Pacific Crest Trail

Monday, April 1, 2019
Determined, driven, ready, and focused are some of the words that best describe Jonathan Maidment, 24, an Alpha from Connecticut who is passionate about hiking and helping the Alpha-1 community.  Jonathan is ready and looking forward to...
Divider

Board of Directors: New appointments to the Executive Committee

Tuesday, March 19, 2019
At their February 2019 meeting, the Alpha-1 Foundation Board of Directors appointed three members to new positions on the Executive Committee: Image: Elizabeth Johnson (left), Fred Walsh (center), Jennifer Jopp (right) Elizabeth Johnson was...
Divider

The Celtic Connection 2019: The pot of gold at the end of the rainbow

Sunday, March 17, 2019
The 2019 Celtic Connection, an annual Building Friends for a Cure event held in Boston, Massachusetts, joined 385 guests for a great night to raise awareness and over $138,000 for Alpha-1 Antitrypsin Deficiency (Alpha-1) research and related...
Divider

FDA to host public meeting on: “Patient Perspectives on the Impact of Rare Diseases,” in April

Wednesday, March 6, 2019
The U.S. Food and Drug Administration (FDA) announced a public meeting and an opportunity for public comment on “Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities,” on April 29, 2019. This public...
Divider

The energy from Rare Disease Day continues

Tuesday, March 5, 2019
On February 28th, 2019, the Alpha-1 Foundation proudly wore its stripes to support the National Institutes of Health (NIH) sponsored Rare Disease Day (RDD) along with patient organizations, politicians, caregivers, medical professionals,...
Divider

Florida couple raising awareness for rare disease

Wednesday, February 27, 2019
Walking from his front door to the driveway’s end can leave Doug Peters gasping for air. Four years ago, he was diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1). “It was a tough reality when they explained to us why he has...
Divider

The Alpha-1 Foundation gears up for the 2019 Global meetings in Dubrovnik, Croatia

Tuesday, February 26, 2019
MIAMI, Feb. 26th, 2019 - The 7th Alpha-1 Global Patient Congress and 4th International Research Conference on Alpha-1 Antitrypsin will be held April 3-6, at the Sheraton Dubrovnik Riviera Hotel in Dubrovnik, Croatia. Patient leaders, physicians...
Divider

The Johnsons are ready to party for a cure… ‘80s style!

Friday, February 15, 2019
Richard and Sarah Johnson of St. Johns, Florida, have not stop believing in the mission of the Alpha-1 Foundation. Eleven years ago, when their son Lucas and daughter Grace were diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) they made a...
Divider

Alpha-1 Foundation expresses gratitude to plasma donors

Wednesday, February 13, 2019
Recently, the New York Times published an article that, in the opinion of the Alpha-1 Foundation, portrayed an image of plasma donors that only focused on one side of the story.  Plasma donors can come from all backgrounds and levels of...
Divider

NORD continues to bridge the gap between patients and their health care

Thursday, February 7, 2019
Since its inception in the early 1980s, the National Organization for Rare Disorders (NORD) has been instrumental in providing assistance to individuals affected by rare diseases and their families; it was influential in the Orphan Drug Act of...
Divider

Alpha-1 Foundation welcomes new President and CEO

Monday, February 4, 2019
The Alpha-1 Foundation Board of Directors is excited to announce the appointment of Miriam O’Day as the new president and chief executive officer (CEO) of the Alpha-1 Foundation. “We thank Miriam for serving as interim CEO, since...
Divider

Tips and resources for Alphas and the cold weather

Wednesday, January 30, 2019
Cold weather conditions can worsen symptoms for lung affected Alphas and for patients with Chronic Obstructive Pulmonary Disease (COPD), as low temperatures can often lead to fatigue and windy days can cause shortness of breath. Also, the dry...
Divider
12345678910Last

Article Search

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

Archive