Tag Archives: Liver

As ‘one-in-a-billion’ child nears transplant, her mother is met with a health crisis and an outpouring of kindness – LancasterOnline: Local News

Posted: Monday, August 11, 2014 11:45 am | Updated: 3:58 pm, Mon Aug 11, 2014.

Donya McCoy is accustomed to fighting on behalf of her daughter.
But a couple of weeks ago, she found herself in a fight for her own health.

McCoy, of Elizabethtown, is the mother of Kennedy Stevenson, a 3-year-old girl who is just one of eight people in the world with an extremely rare metabolic disorder called S-adenosylhomocysteine hydrolase deficiency, or AdoHcy.
Kennedy is, as her mother likes to say, “literally one in a billion.”

When a Lancaster Newspapers story ran detailing Kennedy’s condition, and her mother’s quest to get medical care for her daughter, readers responded with a generosity that McCoy called humbling.

The offers to help Kennedy came just as McCoy was hospitalized with sepsis, a serious blood infection.
Girl’s story ‘struck my heart’

One woman, who doesn’t have a computer, called Lancaster Newspapers to find out how she could get a $50 check to McCoy.
A Lancaster County man, who asked to remain anonymous, donated $1,000 to a GoFundMe account set up by McCoy, to help with the expenses of caring for Kennedy after she undergoes a planned liver transplant at the Children’s Hospital of Pittsburgh.
Kennedy’s story “just struck my heart,” the man said, in a phone interview, noting that he doesn’t have a lot of money, but “for some reason, that hit me right between the eyes.”
“I wish I could give more,” he said. “I know it’s never enough.”
Two other readers came forward, asking if Kennedy still needed a liver donor.

Janet Tate, a registered nurse employed as a supervisor at Mennonite Home Communities, said she shares Kennedy’s blood type — O-positive — and would be willing to be tested as a donor.
She said she was moved by McCoy’s tenacious efforts on behalf of Kennedy.

“My grandson has cystic fibrosis,” she said. “I know how moms especially can really be involved in caring for their kids. … If there was anything at all that I could do, I wanted to do it.”
‘Best chance’

A friend of McCoy’s will be tested first to see if he can be a donor for Kennedy.

The little girl’s brain development, her muscles, her nervous system and her liver all have been impacted by her metabolic disorder.

She now can walk and run and say a few words, but her development has been significantly delayed.
Her physician, Dr. Kevin A. Strauss at the Clinic for Special Children in Strasburg, said he believes that a liver transplant will give Kennedy’s brain “the best chance to develop.”
Because of her enzyme deficiency, she’s now strictly limited to 20 grams of vegetable or fruit protein a day; her restricted diet keeps her on the brink of malnutrition.
Kennedy will be going to the Children’s Hospital of Pittsburgh later this month for a battery of tests to see if she’s strong enough for a liver transplant.

Kennedy would be the first person with her disorder to undergo a liver transplant.

Gearing up for ‘warrior mode’
The stress of her long journey to get Kennedy to this point caught up with McCoy on July 27, when she was hospitalized with a kidney infection that went into her bloodstream.
McCoy spent six days, on intravenous antibiotics, at Penn State Hershey Medical Center.

In dozens of interviews, McCoy never once mentioned that she has lupus, a chronic autoimmune disease that can be exacerbated by stress.

She explained later that she wanted the focus to remain on Kennedy.

“The fact that I haven’t flared sooner is pretty incredible,” she said matter-of-factly. “I really feel God did this – he forced me to take a break, or I wasn’t going to survive (Kennedy’s transplant). … I didn’t have any fight left.”
Kennedy was with her father, Nicholas Stevenson, while McCoy was hospitalized.

“She was having a lot of fun with her daddy,” McCoy said.
When McCoy was released from the hospital, her husband Josh confined her to the couch. She needed rest, he told her, adding, “I need you to go into warrior mode. You have one more big battle.”

McCoy said she just wants to get Kennedy “on the other side” of the transplant.

“I have to get strong and be strong for her,” she said.
On Monday, she said she was recovering well.
She said she was “so grateful” to everyone who had donated money, offered prayers, and had sent their good wishes for Kennedy.

Among them was a member of the Elizabethtown Moose Lodge, who told McCoy that the lodge’s Moose Riders would be taking part in the “Ride for Kennedy,” a benefit motorcycle ride that will be held Saturday, Aug. 30.

“Every little bit has restored my faith in humanity, that people care about and think about our little girl,” McCoy said. “She’s just so special and she just doesn’t even know it.
“We are so touched by all of it.”

Kennedy, she said, is “inspiring people, and I’m just so proud to be her mom.”

The “Ride for Kennedy” will begin and end at Jagged Edge Body Works, 505 N Market St., Elizabethtown. Registration will be from 9-11 a.m., and then it will be kickstands up at 11. The cost is $20 per rider, including a pig roast after the ride concludes.

The GoFundMe account for Kennedy is at http://www.gofundme.com/SavingKennedy

As ‘one-in-a-billion’ child nears transplant, her mother is met with a health crisis and an outpouring of kindness – LancasterOnline: Local News.

Young transplant recipients embark on four-day weekend at Camp Chihopi | Local News – WTAE Home

Now in its 20th year, Camp Chihopi gives patients of Children’s Hospital of Pittsburgh who have had liver or intestine transplants a chance to enjoy the outdoors.

See the video here.

via Young transplant recipients embark on four-day weekend at Camp Chihopi | Local News – WTAE Home.

Organ transplant recipients star in Ogden run


Standard-Examiner correspondent

OGDEN — Last year, Hayden Cullimore attended the annual Dash for Donations 5K in a wheelchair.

This year, the 9-year-old liver transplant recipient ran full speed to the finish line.

“This is the first race I am going to run since my transplant,” Hayden said before the event Saturday. “I wanted to run this year to show my family how strong I am now. I’m also running in honor of my donor and their family to tell them thank you.”

Hayden, who suffered with biliary atresia, received a donor liver last summer. Hayden, along with dozens of other participants, walked or ran in honor of the people whose lives have been affected by organ donation.

The event, sponsored by Intermountain Donor Services, raises both money to support education efforts and to maintain Utah’s Celebration of Life Monument, said Alex McDonald, director of public education and public relations for Intermountain Donor Services.

While people can register individually, most created teams in honor of a loved one who gave the gift of life or to celebrate the life of a recipient.

Ten-year-old Evan Kraaima, who received a new liver four months ago, also participated in the race, crossing the finish line with more energy than he’s had in years.

Alex Douthett was 2 months old when he received a heart transplant that saved his life. Now 19, he said he is very grateful to be alive.

Steve Bird, who formed a team in honor of his donor, shared how a liver transplant saved his life nearly 11 years ago.

Nationally, there are over 123,000 people waiting for a life-saving transplant, said Dixie Madsen, public education coordinator for Intermountain Donor Services. In Utah, and nationwide, the number continues to grow.

Hayden said he’s thankful to have received a new liver so he can continue to live a happy and productive life.

“I feel so much better and I’m not tired and sick like I always used to be,” he said. “Organ donation means that someone chose to give their liver to me so I can stay alive and live my life like a normal kid. I hope that everyone will be an organ donor and want to save lots of other kids like me.”

For more information regarding organ, cornea and tissue donation, or to register on the Yes Utah Donor Registry, log on to www.yesutah.org.

via Organ transplant recipients star in Ogden run.

Liver transplant boy Joseph Walton to go for gold in British Transplant Games | Hull Daily Mail

By Hull Daily Mail  |  Posted: August 03, 2014

By Lucy Leeson

BOUNCING BACK: Seven-year-old Joseph Walton with his dad Neil. Picture: Jerome Ellerby

A YOUNG East Yorkshire boy who underwent a life-saving liver transplant when he was just eight months old is to compete in the Transplant Games.

Seven-year-old Joseph Walton is looking forward to the experience of a lifetime when he competes in the running, obstacle and badminton events at the games held in Bolton from August 7.

Joseph was diagnosed with the rare genetic condition Kabuki syndrome, which affects one in 32,000 babies.

The condition led to him needing a liver transplant when he was eight months old.


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Joseph’s adoptive mother, Diane, said: “When he was born, Joseph had a lot of trouble with his liver and various other problems.

“It was literally by chance that his doctor had been reading about Kabuki syndrome and recognised some of the symptoms Joseph was showing.

“She really stuck her neck out and said she thought Joseph had Kabuki syndrome, and following various tests, it was confirmed.”

Joseph had his life-saving liver transplant and responded well to his treatment.

He was adopted by Diane and her husband Neil when he was three years old.

However, just two months later, the couple, of Aldbrough, faced the prospect of losing Joseph, when his body started to reject his liver.

Diane said: “It was an absolutely terrible time for us all.

“We had only just got him and then we were faced with the prospect of losing him.

“He was in and out of hospital for about a year, until doctors managed to get his liver functioning properly.”

Although Kabuki syndrome means Joseph has some development delay, he leads a relatively normal life.

“He is so full of beans – it is fantastic,” Diane said.

“This is the first year he has been well enough to go to the Transplant Games.

“Any transplant patient is more susceptible to infections and in previous years Joseph hasn’t been well, so now he is even more excited.”

The British Transplant Games will be held in Bolton from August 7–10. First held in 1978, the games are staged annually and celebrate competitors and supporters who have been directly affected by organ transplantation.

Joseph’s dream of taking part in the games has been made possible thanks to the charity Leeds Little Livers, which raises money for children who have undergone life-saving operations, to take part in sporting events.

Diane said: “The games are self-funded, so as a team we are constantly organising events to raise money

“It takes about £60,000 per year to fund the Little Livers Team, so every penny and bit of publicity we can get is greatly appreciated.”

As well as raising money by hosting various coffee mornings and charity football matches, the Aldbrough Carnival will return this month after a 17-year absence to raise money for Leeds Little Livers.

The carnival will take place on Monday, August 25, and will feature a host of attractions.

Diane said: “It will be a fantastic day and a great opportunity to say thank you to everyone who helped send Joseph to the games.”

via Liver transplant boy Joseph Walton to go for gold in British Transplant Games | Hull Daily Mail.

Liver transplant in children – The Times of India

TNN | Jul 31, 2014, 03.31PM IST

The first human liver transplant operation was carried out on an adult in the USA in 1963. The first liver transplant on a child took place five years later. In India, first successful paediatric liver transplant happened in 1998.

When do children need liver transplant: Common indications in children are cholestatatic liver diseases. Cholestatic liver disease is a condition in which a specific bilirubin called conjugated (direct) bilirubin remains persistently high. Biliary atresia is a condition in which the tiny tube connecting the liver and the small intestine is missing. As a result of which bile, which excretes bilirubin, does not reach small intestine and the child becomes jaundiced. Biliary atresia is the most common indication for liver transplant in children. It is also the most common condition requiring liver transplant in the first year of life. The other conditions include acute liver failure from multiple causes, metabolic conditions involving the liver like Wilson disease, cystic fibrosis, some glycogen storage disease, tumours in children and other diseases causing chronic liver disease.

The surgery: Liver transplantation is a major form of surgery. It is considered when other forms of treatment are ineffective or when a child can no longer lead a good quality of life. The aim of liver transplantation is to return a child/ to health with an improved quality of life. Childhood vaccinations are expedited if not administered yet. If the baby/child is malnourished then extensive nutritional rehabilitation is done before the transplant. A donor also has to undergo various tests to judge the suitability for transplant. After all these, a liver transplant is performed. The surgery can last between 8- 12 hours.

After surgery: The child is then shifted to a liver ICU. This allows your child to rest completely after the operation and be closely monitored over this critical period with close monitoring. The stay is variable but generally is between 1-2 weeks. He /she is then shifted to ward for further care. The duration of stay is variable but generally the child is discharged before three weeks. The child needs to be on medicines on a daily basis so that the body does not reject the new liver. After discharge it is time to return to a ‘normal’ life.

Success rate: With newer surgical techniques and better anti-rejection medicines the immediate success rate is in the high 90s.

By — Dr Rajeev Tomar, Senior Consultant-Paediatrics, Fortis Hospita, Noida

via Liver transplant in children – The Times of India.